Rehabilitation Dataset Directory: Directory Search

Summary:

The BRFSS is designed to monitor risk behaviors related to chronic diseases, injuries and death, identify emerging health problems, establish and track health objectives, and develop and evaluate public health policies and programs. It is an annual cross-sectional telephone-based survey of adults ages 18 and older that provides national, state, and selected county and MSA level data on health risk behaviors, preventive health practices, and health care access primarily related to chronic disease and injury.

The survey is conducted by the state health departments with technical and methodological assistance provided by the U.S. Centers for Disease Control and Prevention (CDC). The survey is comprised of a core set of questions that all states must include and a set of optional modules that individual states may choose to include. Each optional module focuses on a specific topics such as adult asthma history, anxiety and depression, cardiovascular health, cognitive decline, pre-diabeties, cancer screening, visual impairment and access to eye care. See optional modules by category here: http://www.cdc.gov/brfss/questionnaires/ )

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Summary:

The National Center for Health Statistics conducts the National Ambulatory Medical Care Survey (NAMCS) to measure the health care utilization and delivery of ambulatory services across various providers in the U.S. The NAMCS is based on a sample of patient visits to a representative sample of non-federal employed office-based physicians primarily engaged in direct patient care. The physician/office survey collects a wide variety of information at the physician/office level while the patient data includes detailed information regarding reason for visit, vital signs, diagnosis and treatments.

NAMCS does not include visits to hospital emergency departments, outpatient departments, department of veterans affairs, occupational health clinics, and institutional clinics. A separate sample of community health centers (CHCs) was added to the survey in 2006.

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Summary: The National Death Index (NDI) is a national, computerized registry of death records compiled from vital statistics records submitted to the NCHS by each state's vital statistics office. Established by the National Center for Health Statistics (NCHS), the NDI can be used for conducting retrospective and prospective health services and epidemiological research. Since 1979, the NDI has collected death-related information (cause of death primarily) with records updated annually. The NDI includes information about location of death (state), the date of death, and corresponding death certificate numbers. Investigators can obtain cause of death codes available as an International Classification of Diseases (ICD) code using the NDI Plus service (for an additional cost).
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Summary:

The NHIS is a cross-sectional household interview survey. It is the primary data source on the health of the civilian, non-institutionalized population of the United States. The survey, initiated in 1957, was designed "to produce statistics on disease, injury, impairment, disability, and related topics on a uniform basis for the Nation.” In general, the NHIS exists to monitor the health of the U.S. non-institutional population, and to display these characteristics by socio-economic and demographic characteristics. NHIS data are used within government agencies and the academic research community to monitor developments in the prevalence of illness, disability, and other health-related conditions. Survey content of the NHIS is updated about every 10-15 years. A redesign was instated in 1997. The most recent test redesign occurred in 2018. A full implementation of the redesign is scheduled for 2019.

The redesigned 2019 NHIS continues to identify people with functional limitations and difficulties and a battery of mental health questions have been added to the new rotating core to assess depression and anxiety. More about the 2018/19 questionnaire redesign can be found at: https://www.cdc.gov/nchs/nhis/2019_quest_redesign.htm .

While not covered in this entry, in 1994 a separate NHIS Disability (NHIS-D) survey was conducted. Additional information is available at:

https://www.cdc.gov/nchs/nhis/nhis_disability.htm

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Summary: The National Center for Health Statistics conducts the National Health and Nutrition Examination Survey (NHANES) to measure health parameters and the nutritional status of a nationally representative sample of adults and children in the United States. It combines both survey and physical examination data that are conducted and collected at mobile examination centers (MEC) that travel to selected sites throughout the country. The MEC consist of four large trailers that contain all of the diagnostic equipment and personnel necessary to conduct a wide range of both physical and biochemical evaluations. Interviews and physical examinations are conducted to collect the health information. The NHANES interview includes demographic, socioeconomic, dietary, and health-related questions. The examination component consists of medical, dental, and physiological measurements (height, weight, and blood pressure), as well as laboratory tests.
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Summary: The NHHCS is a survey of a national sample of home health care agencies and hospice care agencies. All agencies selected to participate in the survey were certified by Medicare and/or Medicaid or individual states at the time of the survey. Home health agencies that provide only personal assistance services or durable medical equipment are not part of the survey. The survey uses Computer-Assisted Personal Interviews (CAPI) for data collection regarding services the agencies provide and staffing levels. The survey also gathers data (through home health and hospice agencies) on demographic characteristics of patients who receive services. The 2007 version of the survey included a supplemental survey of home health aides employed by home health and/or hospice agencies (National Home Health Aide Survey - NHHAS).
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Summary: The NNHS is a nationwide sample survey of nursing homes, staff, and residents. It collects data at the provider and resident level. The provider-level characteristics include the number of beds, ownership status, certification status, and provision of services and program to residents. The resident-level characteristics contain demographic characteristics of residents, health-related factors, services received, and source of payment used by residents. The survey uses Computer-Assisted Personal Interviews (CAPI) for data collection from nursing home administrators, staff, and residents.
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Summary: The NCHS is a CATI based survey fielded in 2000 that provides baseline data on pediatric care and its impact from the parents' perspectives at the national level. Questions focus on pediatric care delivery to families with children under 3 years of age, and the promotion of young children’s health by their families. The interview asks whether the child has experienced asthma, ear infections, eczema/skin allergies, and food/digestive allergies, as well as whether the child has special health care needs.
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Summary:

The NSRCF is a relatively new survey (2010) designed to produce national estimates of residential care facilities and the people who live there. It collects information regarding facility characteristics, resident demographics, health, functional status and activities as well as resident services and charges.

The types of facilities include: assisted living residences; board and care homes; congregate care; enriched housing programs; homes for the aged; personal care homes; and shared housing establishments that are licensed, registered, listed, certified, or otherwise regulated by a state. Facilities that provide care exclusively for individuals with developmental disabilities and/or mental illness are not included in this survey.

The NSRCF is now part of the National Study of Long-Term Care Providers (NSLTCP), which is a biennial study that originated in 2012 of adult day services centers, residential care communities, nursing homes, home health agencies, and hospice agencies.  For more information, see  https://www.cdc.gov/nchs/nsltcp/index.htm

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Summary:

The Rehabilitation Services Administration's Case Service Report (RSA-911) is the administrative data collected by each state Vocational Rehabilitation (VR) agency on consumers closed in a fiscal year. RSA-911 data include information regarding demographics, disability, service interventions, reason for case closure, sources of financial support, and employment status at closure. Some limited work-related information (e.g., income and hours worked per week) is reported during the application for services and at service closure. The data can be partitioned into three periods by data collection method: (1) before 2013, (2) 2014-June 2017, and (3) from July 2017 onward.

Major changes beginning July 2017: both open and closed cases will be reported and collected on a quarterly basis. In addition, there will be many new variables according to the amended Rehabilitation Act of 1973 in 2014, such as pre-employment transition services, new WIOA performance accountability measures (e.g., employment status during the fourth quarter after exit quarter), and more.

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Summary:

The National Longitudinal Transition Study-2 (NLTS-2) was an annual longitudinal study funded by the U.S. Department of Education and documents the experiences of a national sample of students receiving special education who were 13 to 16 years of age in 2000 as they moved from secondary school into adult roles. The study collected information regarding a wide range of topics, including high school coursework, extracurricular activities, academic performance, post-secondary education and training, employment, independent living, and community participation. It also detailed a list of medications taken by the students.  Note:  a related new study, the NLTS 2012, is in progress: http://ies.ed.gov/ncee/nlts/

NLTS2012 data request page: https://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=NCEE20174020 

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Summary: The Area Health Resource File (AHRF), formally the Area Resource Files (ARF), is a database of information regarding the U.S. health care system and factors that may impact health care and health status in the U.S. The data contains nearly 6,000 variables and is available at the national, state and county levels. It is maintained and annually released by the U.S. Health and Human Services (HHS) Health Resources and Services Administration (HRSA). It includes information in eight different general topical areas: Health Care Professions, Health Facilities, Population Characteristics, Economics, Health Professions Training, Hospital Utilization, Hospital Expenditures, and Environment. The AHRF data integrates data from over 50 sources from a number of agencies including the American Medical Association, American Hospital Association, U.S. Census Bureau, CMS, Bureau of Labor Statistics, National Center for Health Statistics, and Veteran’s Administration.
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Summary:

** Note: the Area Resource File (ARF) has been superseded by the Area Health Resource File (AHRF). **

It contains information related to health facilities, health professions, resource scarcity, health status, economic activity, health training programs, and socioeconomic and environmental characteristics. The data are primarily presented at the county level. State FIPS and regional codes enable researchers to compile and present information at more aggregate levels of geography. The file is a collection of data from several agencies: American Medical Association, American Hospital Association, U.S. Census Bureau, CMS, Bureau of Labor Statistics, National Center for Health Statistics, and Veteran’s Administration.

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Summary: BSA DME Line Items PUF was released from CMS for 2008 and 2010. Contains information of Medicare Durable Medical Equipment (DME) claims submitted by a random 5% of Medicare beneficiaries in the reference year. Note that the sample included in this file is deliberately disjoint (no overlap) from the samples in the CMS research file and other Public Use Files (PUF) and cannot be linked. Each row in the dataset represents an item of the DME claim and cannot be linked to by beneficiary
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Summary: The Basic Stand Alone (BSA) Home Health Agency (HHA) Beneficiary Public Use Files (PUF) was released from CMS for 2008 and 2010. Contains information for a random 5% of Medicare beneficiaries that had at least one Home Health Agency (HHA) claim in the reference year. Note that the sample included in this file is deliberately disjoint (no overlap) from the samples in the CMS research file and other Public Use Files (PUF) and cannot be linked.
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Summary: The BSA SNF Beneficiary PUF was released from CMS for 2008 and 2010. Contains information for a random 5% sample of Medicare beneficiaries that had at least one Skilled Nursing Facility (SNF) admission in the reference year. Note that the sample included in this file is deliberately disjoint (no overlap) from the samples in the CMS research file and other Public Use Files (PUF) and cannot be linked.
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Summary:

The Boston Rehabilitative Impairment Study of the Elderly (Boston RISE) was a prospective cohort study of 430 primary care patients, aged 65 years and older, who were at risk for declining mobility and disability at baseline. The study was designed to better understand the predictors for mobility decline and investigate the combinations of neuromuscular impairments related to mobility decline and disability.

RISE collected extensive data from each participant at baseline including a physical examination, physical performance tests and questionnaires addressing the following topics: functional ability, falls, rehabilitative care, physical activity, activity limitations, medical history, chronic conditions and pain. Follow-up assessments following the same structure were conducted at 12 and 24 months post baseline data collection. 

Participants from the original sample were invited to participate in the extension and the ancillary studies. The extension study included follow-ups at 36 and 48 months.

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Summary: The BMS data are collected through the four Burn Injury Rehabilitation Model Systems centers (BIMSC). The BIMSC are customized programs for severe burns for all age groups within different regions. The programs support research and multidisciplinary care and rehabilitation services for individuals with severe burns. Each center is involved in the collection of data, and conducts specific research with the goal of improving long-term functional, psychosocial, and quality-of-life outcomes with the objective to improve survival rate, retain normal physical function and promote psychosocial adaptation for individuals with severe burns. BMS includes data on children and measures including children’s health-related quality of life (HRQOL). The Burn Model Systems Data Coordinating Center (DCC) supports and directs the collection, management and analysis of the BMS center data.
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Summary:

The Carrier Fee-for-Service file (formerly known as the National Carrier file) contains procedure-level claims and billing data for Medicare Part B beneficiaries receiving services from non-institutional health providers. Non-institutional health providers include: physicians, physician assistants, clinical social workers, nurse practitioners. Claims for some organizational providers, such as free-standing facilities are also found in the Carrier Claims File.  Examples include independent clinical laboratories, ambulance providers, free-standing ambulatory surgical centers and free-standing radiology centers.. The data contains beneficiary demographic information, primary claim diagnosis, and up to 12 additional diagnoses (ICD-10 codes), as well as Health Care Common Procedure Coding System (HCPCS) codes and Current Procedural Technology (CPT) codes. Files also contain provider-level information including unique physician identification number (UPIN), and national provider identifier (NPI). Procedure-level details include: date and place of service, provider charges submitted, payments and recipient co-payments.

Studies often combine the Medicare National Carrier file data with the Medicare Outpatient Standard Analytical File (SAF) data to examine outpatient utilization of health services provided by both non-institutional providers and institutional-affiliated providers.

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Summary:

The Adult HCAHPS survey asks people aged 18 and over to report their recent experience of inpatient care. The purpose of the HCAHPS is to provide patient feedback that can be used for institutional quality projects and rating the quality of inpatient facilities. It includes 10 measures of patient experience including 6 composite measures, two individual items and two global ratings.

Information from HCAHPS is also aggregated for star ratings in Medicare's Hospital Compare database.

The Centers for Medicare & Medicaid Services (CMS) is responsible for implementing the study and it is used in both quality reporting and value-based purchasing decisions. 

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Summary:

Child HCAHPS surveys the parent or legal guardian of children aged ≤17 years old to assess their experiences of their hospital inpatient care. The purpose of the Child HCAHPS is to provide parent/guardian feedback that can be used for institutional quality projects and for rating the quality of inpatient facilities.  Child HCAHPS covers most of the topics addressed by the Adult version of the Hospital Survey (Adult HCAHPS) but also includes topics that are particularly relevant to pediatric care. 

Note: Child HCAHPS data is not currently available.

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Summary: The Durable Medical Equipment file (DME) contains information on prescribed durable medical equipment provided to Medicare beneficiaries and the reason for the prescription (ICD-9 diagnostic codes for individual receiving the devices). Beneficiaries with Part B coverage are eligible to get DME for medical reasons and home usage. DME includes equipment such as: Air-fluidized beds, Blood sugar monitors and diabetic testing strips, Continuous Positive Airway Pressure machine, Home oxygen equipment, Hospital beds, Infusion pumps, Nebulizers, Patient lifts, Suction pumps, Traction equipment, Canes, Crutches, Commode chairs, Walkers, Wheelchairs, Prosthesis and orthotics. Equipment is identified using the Healthcare Common Procedure Coding System (HCPCS). The file also contains information regarding the provider number of the DME supplier, and the amount reimbursed by CMS to the supplier.
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Summary: The HCUP- KID is a database of hospital inpatient stays for children ages 20 and under, designed to permit researchers to study a broad range of conditions and procedures related to child health issues. It allows researchers to identify, track, and analyze national trends in health care utilization, access, charges, quality, and outcomes. The KID is one of the databases and software tools developed as part of the Healthcare Cost and Utilization Project (HCUP) to inform decision making at the national, state, and community levels.
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Summary: The NIS is the largest all-payer database. It contains information related to inpatient stays, including both clinical and administrative (charge) information. The 2014 NIS lists all discharge data from 4,411 hospitals located in 44 states and the District of Columbia. The large sample size of the NIS enables analyses of rare conditions, such as some congenital anomalies (e.g., spina bifida), and special patient populations. The data files are adjusted for severity of medical conditions using tools developed by AHRQ.
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Summary: The SID contain clinical and utilization of resources information that is included in a typical hospital discharge. The SID contain both clinical and nonclinical information on all patients, regardless of payer types. The following 47 states and the District of Columbia submit their hospital discharge information: Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Florida, Georgia, Hawaii, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, and Wyoming.
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Summary:

The HCRIS is used in order to compute the cost-to-charge ratio and determine the “cost” of providing services by different institutions. Cost Report files exist for:

• Hospitals (CMS-2552-96 and CMS-2552-10),
• Skilled Nursing Facilities (CMS-2540-96 and CMS-2540-10),
• Home Health Agencies (CMS-1728-94), Renal Facilities (CMS-265-94 and CMS-265-11),
• Health Clinics (CMS-222-92),
• Hospices (CMS-1984-99),
• Community Mental Health Centers (CMS-2088-92), and
• Freestanding Federally Qualified Health Centers (FQHC14).

The files exist in a relational database (tables) format. There are three files associated with each dataset: the report file, the alpha-numeric file, and the numeric file. A fourth file, the rollup file, additionally exists for Hospitals (CMS-2552-96), Skilled Nursing Facilities (CMS-2540-96), and Home Health Agencies (CMS-1728-94). These files can be linked with each other by a unique key: the report record number.

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Summary:

The Home Health Compare (HHC) database contains home health agency level data. Data are collected from summarized patient assessments and Medicare claims. It is designed to allow patients and their caregivers the ability to compare home health agencies on outcome measures and process of care measures. The Home Health Compare datasets include a subset of Outcome and Assessment Information Set (OASIS) based quality performance measures collected by the Centers for Medicare and Medicaid Services (CMS). It includes both process of care and outcome of care measures:

• Process of care measures: how often an agency gave the recommended care (like checking patients for depression when they start getting care). A score of 88% for a process of care measure is interpreted as 88% of the patients received that recommended care during their episode of care.
• Outcome of care measures: the results of the care an agency provided compared to other agencies, taking into account differences in the patients they care for. An agency’s score of 58% for an outcome measure means that 58% of the time the Home Health Agency was able to assist their patients in regaining or maintaining their ability to function during their episode of care, such as improve their ability to walk and move around.

Note that no patient level data is available. All data is aggregated at the national, state and individual Health Care agency levels.

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Summary: The IRF-PIA contains information on individuals discharged from inpatient rehabilitation facilities (IRF) who are Medicare beneficiaries. These files exist from the year 2002 onwards and include detailed information regarding functional status at the time of admission and discharge from inpatient rehabilitation facilities. The files also contain information related to the quantity of rehabilitation services provided.
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Summary: The Inpatient Rehabilitation Facility Compare (IRF Compare) is a facility level database developed and monitored by the Centers for Medicare and Medicaid Services (CMS). Its purpose is to provide quality of care measures for inpatient rehabilitation facilities. Data are collected from Medicare claims and Inpatient Rehabilitation Facility-Patient Assessment Instrument (IRF-PAI) file as well as the Centers for Disease Control and Prevention (CDC) National Healthcare Safety Network (NHSN) tool.

Note that patient level data are not available. All data are aggregated at the national, state and specific Inpatient Rehabilitation Facility level.
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Summary:

The Long-term Care Hospital (LTCH) Compare includes information on approximately 400 hospitals across the nation and provides a snapshot of the quality of care in each hospital. It contains data on long-term care hospitals based on important indicators of healthcare quality, such as the proportion of patients health care acquired conditions, falls, pressure ulcers and unplanned re-admission rates. 

Note that patient level data are not available. All data are aggregated at the national, state and specific Long-term Care (LTC) Hospital level.

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Summary:

The Chronic Condition Segment (CCS) is one of five segments available in the Chronic Conditions Data Warehouse (CCW) Master Beneficiary Summary File (MBSF). The Chronic Condition Segment (CCS) includes identifiers for 27 chronic health conditions.

The Chronic Conditions Data Warehouse (CCW) Master Beneficiary Summary File (MBSF) is a research database created by the Center for Medicare and Medicaid Services (CMS) following passage of the Medicare Modernization Act of 2003. CCW data contains CMS administrative data that spans multiple care settings starting in 1999, and includes a unique beneficiary key that allows the linking of an individual's data across data types and sources.  It contains 100% Medicare files (1999-present), as well as 100% of Part D Prescription Drug Event data (1999-present).

The design of the CCW linked data allows researchers to analyze information across the continuum of care and multiple care settings. The purpose of the CCW is to help researchers identify and improve the quality of healthcare for chronically ill Medicare beneficiaries. 

The Master Beneficiary Summary File (MBSF) is made up of five segments. CCW data are available upon request for a random 5% sample, for a specific chronic condition cohorts or an investigator-defined sample. The Chronic Condition Segment contains 27 Chronic Conditions  for which 3 data points per condition are provided: 

1. End-of-Year Indicator- whether or not the patient met CCW criteria for the condition at end of calendar year
2. Mid-Year Indicator- whether or not the patient met CCW criteria for the condition on July 1 of specified year
3. Ever – the date a beneficiary first met claims criteria for the chronic condition

There are four other data segments available in the Master Beneficiary Summary File that can be requested and linked to the Chronic Condition Segment (CCS) data:

• Base (A/B/D)
• Cost and Use Segment (CUS)
• Other Chronic or Potentially Disabling Conditions segment
• National Death Index (NDI) segment

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Summary:

The Cost & Use Segment (CUS) is one of five segments available in the Chronic Conditions Data Warehouse (CCW) Master Beneficiary Summary File (MBSF). The Cost and Use segment includes summaries of Medicare payment amounts and services utilization.

The CUS is a segment of the Chronic Conditions Data Warehouse (CCW) Master Beneficiary Summary File (MBSF), a research database created by the Center for Medicare and Medicaid Services (CMS) following passage of the Medicare Modernization Act of 2003. CCW data contains CMS administrative data that spans multiple care settings starting in 1999, tied together with a unique beneficiary key allowing linkages of an individual's data across data types and sources.  It contains 100% Medicare files (1999-present), 100% Medicaid files (1999-present) as well as 100% of Part D Prescription Drug Event data (1999-present).

The design of the CCW linked data allows researchers to analyze information across the continuum of care across multiple care settings. The purpose of the CCW is to help researchers identify and improve the quality of healthcare for chronically ill Medicare beneficiaries. 

The Master Beneficiary Summary File (MBSF) is made up of five segments. CCW data are available upon request for a random 5% sample, for specific chronic condition cohorts or an investigator-defined sample.

The other data segments available in the Master Beneficiary Summary File can be requested and linked to the Cost and Use segment data:

• Base (A/B/D)
• Chronic Condition Segment (CCS)
• Other Chronic or Potentially Disabling Conditions segment
• National Death Index (NDI) segment

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Summary:

The Other Chronic or Potentially Disabling Conditions is one of five segments available in the Chronic Conditions Data Warehouse (CCW) Master Beneficiary Summary File (MBSF). The OCPDC segment of the MBSF contains 39 chronic health, mental health, substance abuse, and potentially disabling condition categories. These conditions are designed to enhance research of the Medicare-Medicaid dual enrolled population, however they are available for all non-dually enrolled Medicare and Medicaid beneficiaries as well.

The conditions include: 11 mental health and tobacco use conditions, 15 developmental disorder and disability-related conditions, and 9 other chronic physical and behavioral health conditions which were developed by CMS.  There is an end of the year version of the variables and an “ever” indicator variable for each of the conditions.

The Chronic Conditions Data Warehouse (CCW) Master Beneficiary Summary File (MBSF) is a research database created by the Center for Medicare and Medicaid Services (CMS) following passage of the Medicare Modernization Act of 2003. CCW data contains CMS administrative data that spans multiple care settings starting in 1999, and includes a unique beneficiary key that allows the linking of an individual's data across data types and sources.  It contains 100% Medicare files (1999-present), as well as 100% of Part D Prescription Drug Event data (1999-present).

The design of the CCW linked data allows researchers to analyze information across the continuum of care and multiple care settings. The purpose of the CCW is to help researchers identify and improve the quality of healthcare for chronically ill Medicare beneficiaries. 

The Master Beneficiary Summary File (MBSF) is made up of five segments. CCW data are available upon request for a random 5% sample, for a specific chronic condition cohorts or an investigator-defined sample.  The Other Chronic or Potentially Disabling Conditions data includes 35 specific health conditions for which 3 data points per condition are provided: 

1. End-of-Year Indicator- whether or not the patient met CCW criteria for the condition at end of calendar year
2. Mid-Year Indicator- whether or not the patient met CCW criteria for the condition on July 1 of specified year
3. Ever – the date a beneficiary first met claims criteria for the chronic condition

There are four other data segments available in the Master Beneficiary Summary File that can be requested with, and linked to the Other Chronic or Potentially Disabling Conditions data:

• Base (A/B/C/D)
• Cost and Use Segment (CUS)
• Chronic Condition Segment (CCS) 
  
• National Death Index (NDI) segment

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Summary:

The Master Beneficiary Summary File (MBSF) Base (a/b/c/d*) contains information on Medicare enrollees including demographics (e.g., age, gender, race, and type of residence) and enrollment information (e.g., original reason for enrollment under Medicare, current reason for enrollment under Medicare, dual eligibility status, and monthly entitlement indicators) as well as the enrollment status of each Medicare beneficiary enrollee during a calendar year. The file also includes variables specific to enrollment benefits, monthly indicators for Medicare Advantage plan enrollment, and State Reported Dual Eligibility Status (a State Buy-In indicator). 

The Master Beneficiary Summary File Base provides basic characteristics of the Medicare population and serves as the denominator file for the four MBSF related data segments available that can be linked to this base data:

• Cost and Use Segment (CUS)
• Chronic Condition Segment (CCS) 
• Other Chronic or Potentially Disabling Conditions segment
• National Death Index (NDI) segment

* Part A: Hospital Insurance, Part B: Medical Insurance, Part C: Medicare Advantage  (Medicare managed care plans), Part D: Prescription Drug Program plan

Note: the MBSF replaced the Medicare Beneficiary Summary File as of 03/2012

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Summary:

The MEPS is a multi-component national probability sample survey of individuals, families, health care providers, and employers across the United States. This survey was initiated in 1996 with the purpose of providing national-level estimates of health care utilization, health care access, expenditures, and health insurance coverage of the non-institutionalized U.S. civilian population. The MEPS has three major components:

(1) MEPS Household Component - MEPS HC;

(2) MEPS Medical Provider Component - MEPS MPC; and

(3) MEPS Insurance/Employer Component - MEPS IC.

The MEPS HC has been extensively used by researchers as it is a public-use dataset containing key variables of interest; all other MEPS components are only available as restricted-use files.

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Summary:

** NOTE: As of 03/2012 the Beneficiary Summary File is no longer available. The information found in this file is now found in the Master Beneficiary Summary File (MBSF) Base (a/b/c/d) segment.** 

The Beneficiary Summary File contains demographic (e.g., age, gender, race, and type of residence) and enrollment (e.g., original reason for enrollment under Medicare, current reason for enrollment under Medicare, and monthly entitlement indicators) information about each Medicare beneficiary enrollee during a calendar year. Prior to 2006, these files were known collectively as the Denominator File. As of 2006, the file also includes variables specific to enrollment in Medicare Part D benefits. They also include a derived race/ethnicity code from the Research Triangle Institute’s developed algorithm, monthly indicators for Medicare Advantage plan enrollment, and State Reported Dual Eligibility Status (a State Buy-In indicator).

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Summary:

Medicare-certified institutional providers are required to submit an annual cost report to a Medicare Administrative Contractor (MAC). The cost report contains provider information such as facility characteristics, utilization data, cost and charges by cost center (in total and for Medicare), Medicare settlement data, and financial statement data. 

The Medicare Cost Report Files are used in order to compute the cost-to-charge ratio and determine the ‘cost’ of providing services by different institutions. CMS maintains the cost report data in the Healthcare Provider Cost Reporting Information System (HCRIS). HCRIS includes cost report data subsystems for the following institution provider types:

• Hospital
• Skilled Nursing Facility (SNF)
• Home Health Agency (HHA)
• Renal Dialysis Facility 
• Health Clinic
• Hospice
• Federally Qualified Health Clinic (FQHC)
• Rural Health Center (RHC)
• Community Mental Health Center (CMHC) 

The data consists of every data element included in the HCRIS extract created for CMS by the provider's Administrative Contractor.

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Summary:

The MCBS is a longitudinal survey that selects a nationally-representative sample of Medicare beneficiaries and longitudinally tracks their health status, health expenditures, and utilization of services. It uses a rotating panel design with each survey participant interviewed three times a year over four years, regardless of their residential settings (community or institutions). There are two types of data files in the MCBS: from 1991-2013, these were the Access to Care file and Cost and Use file; from 2015 and beyond, these are the Survey file and the Cost Supplement file.

1991-2013: The Access to Care file contains information on beneficiaries' access to health care (including rehabilitation services), satisfaction with care, and usual source of care. The MCBS Cost and Use file links Medicare financial claims to survey-reported events.

2015-present: The Survey file contains information about demographics (household characteristics, information on income and assets), health care (access, satisfaction, usual source of care, preventative service), health status (medical conditions and health behaviors), timeline data (health insurance and residence), and facility characteristics (if applicable). The Cost Supplement file contains details about health care cost (expenditure and payment, source of payment, supplementary insurance costs), health care utilization (services received), and fee-for-service claims data. The Cost Supplement file must be merged with the Survey file to perform analyses; the MCBS file containing cost information is no longer an independent module.

Public Use Files (PUF) are available based on the 2013 and 2015 data (includes  community sample only and more limited variables - see limitations section)

Note that the data for 2014 were not released due to the 2015 redesign of the MCBS.

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Summary: The Medicare HOS is a longitudinal survey of a nationally-representative sample of the beneficiaries enrolled under the Medicare Advantage plan or Medicare managed care (HMO) plan. The survey selects a random national sample of beneficiaries from each participating Medicare Advantage Organization (MAO) who are surveyed in the spring. The same cohort is re-surveyed after two years. The main objective of the HOS is to collect information on beneficiaries related to physical health and mental health in order to track and improve the quality of Medicare Advantage program. A modified version of the Medicare Health Outcomes Survey-Modified (HOS-M) is administered to vulnerable Medicare beneficiaries with the greatest risk of poor health outcomes. The main goal of the HOS-M is to assess the frailty of the population in these health plans in order to adjust reimbursement rates for this population. These beneficiaries are enrolled in the Program of All-Inclusive Care for the Elderly (PACE).
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Summary:

A modified version of the Medicare HOS-M is a cross-sectional survey of a nationally-representative sample of the beneficiaries enrolled under the Medicare Advantage plan or Medicare managed care (HMO) plan.  This survey is administered to vulnerable Medicare beneficiaries with the greatest risk of poor health outcomes. The main goal of the HOS-M is to assess the frailty of the population in these health plans in order to adjust reimbursement rates for this population. These beneficiaries are enrolled in the Program of All-Inclusive Care for the Elderly (PACE). It determines physical and mental health at one single time point without any follow up component.

The Medicare HOS-M contains two core components: the Veterans RAND 12 Item Health Survey (12 physical and mental health status questions), and Activity of Daily Living (ADL) items (6 items to compute frailty adjustment factor). In addition there are items related to physical activity levels, functional status, memory loss, and urinary incontinence. The survey has the option of completing responses using self-reporting or proxy reporting.
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Summary:

The MEDPAR file contains utilization of services and claims data for Medicare beneficiaries during their stay in Medicare-certified inpatient short-term hospitals, skilled nursing facilities, inpatient rehabilitation facilities, and long-term care hospitals. The data are available in two formats: a 5% format that contains a random selection of 5% of total Medicare beneficiaries, and a 100% sample.

These records are all from inpatient facilities (Part A) and do not have any information related to outpatient care (Part B). The claims data in MEDPAR are final after taking into account all adjustments. The dataset is useful for tracking patterns of inpatient care for patients with various medical conditions. It also contains information related to the medical and surgical procedures that patients underwent during their stays in inpatient facilities.

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Summary:

The Medicare-Medicaid Linked Enrollee Analytic Data Source (MMLEADS) is a relatively new (2012) comprehensive dataset for researchers investigating health services utilization patterns and associated outcomes for dual enrollees, especially individuals with disabilities. It is developed by the Centers for Medicare and Medicaid Services (CMS) and contains person-level information for Medicare and/or Medicaid beneficiaries (duel enrollees). MMLEADS offers files at two levels: individual-level (extracted from Medicare and Medicaid beneficiary-level files), and service-level (extracted from Medicare and Medicaid service-level files).

It includes 27 individual-level chronic and clinical conditions as defined by the Chronic Condition Warehouse (CCW) including: cardiovascular conditions, cancer, musculoskeletal disorders, pulmonary conditions, metabolic syndrome, and mental health disorders. For more information on the CCW, see: https://www.ccwdata.org/web/guest/condition-categories

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Summary: The Long Term Care MDS is a standardized screening and clinical assessment tool of the health and functional status of all residents (regardless of payer types) in skilled nursing facilities (long-term care facilities) certified by Medicare and Medicaid. The MDS 3.0 was implemented in October 2010 replacing the MDS 2.0 version. The MDS measures the health status of residents in the following domains: Hearing, Speech, and Vision; Cognitive Patterns; Mood; Behavior; Preferences for Customary Routine and Activities; Functional Status (including Activities of Daily Living); Bladder and Bowel; Medical Diagnosis; Health Conditions; Skin Conditions; Medications; Special Treatment and Procedures; Participation in Assessment and Goal Settings; and Therapy Supplement for Prospective Payment System.
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Summary: The NRD is a recently developed (2013) annual database by the Agency for Healthcare Research and Quality (AHRQ) and contains over 14 million records and more than 100 clinical and non-clinical data elements. The database is designed for tracking all types of national readmission rates across all types of payers as well as uninsured individuals. “All payers” include patients enrolled through Medicare, Medicaid, and private insurance. It was developed by the Healthcare Cost and Utilization Project (HCUP) with the help of Federal, State, and Industry collaboration and supported by the Agency for Healthcare Research and Quality (AHRQ). The NRD is drawn from the HCUP State Inpatient Database (SID), and includes information on patient discharges with and without repeat hospital visits in a year and those who have died in the hospital. Repeated stays may or may not be related. The NRD addresses a current gap in health service research by providing nationally representative weighted data across all age groups, payers, and the uninsured population.
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Summary: The Centers for Medicare and Medicaid Services (CMS) launched a quality rating system for Medicare and Medicaid certified nursing homes (skilled nursing and long-term care facilities) on December 2008. This ongoing data collection aims to assist consumers (including patients) in selecting nursing homes by evaluating outcomes and deficiencies. The Nursing Home Compare uses a “five star rating” system, which is a composite measure derived from health inspection findings of these facilities, staffing (e.g., availability of nursing staff per resident per day), and quality measures (e.g., falls, pain, functional status, hospital readmissions).

Note that no patient level data is available. All data is aggregated at the national, state and individual Nursing Home level.
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Summary:

The Outcome and Assessment Information Set (OASIS) is a patient specific, comprehensive assessment tool/database designed to measure the quality of home health services and patient health outcomes. OASIS contains data on all adult (ages 18 years and older) Medicare and Medicaid patients who receive non-maternity skilled health services from Medicare certified home health care agencies. It is completed by home health care personnel (typically an RN) and is specifically designed to measure changes in patient health status between two or more time periods.

OASIS is longitudinal including the patient’s health profile at the beginning of services, with follow-up(s) every 60 days during receipt of services, and at discharge. It includes measures of services utilization, quality improvements, and patient-level risk factors for adverse health outcomes among other topics. The OASIS data contains patient case mix profile reports and patient outcome reports which are used for reimbursement purposes and certification process.

In 2010, a comprehensive version of OASIS (OASIS-C) was implemented to add more information on process of care and clinical interventions. OASIS-C2 is the current version, which accounts for recent changes within the health care system (e.g., to evaluate home health care quality).

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Summary:

The Outpatient Standard Analytical File (SAF) contains procedure-level claims and billing data for Medicare Part B beneficiaries receiving services from institutional-affiliated outpatient health providers (including emergency room visits not resulting in inpatient hospital stays). Institutional outpatient providers include: hospital outpatient departments, renal dialysis facilities, comprehensive outpatient rehabilitation facilities, and community mental health centers among others. The SAF includes: beneficiary demographic information, primary claim diagnosis and up to 25 additional diagnosis codes (ICD-9), Health Care Common Procedure Coding System (HCPCS) codes and Current Procedural Technology (CPT) codes. The SAF also contains provider information including CMS Certification Number (CCN), facility type, unique physician identification number (UPIN), and national provider identifier (NPI) for all healthcare providers. Procedure-level details include date and place of service, charges submitted by the providers, payments for services and service recipient copayments.

Studies often combine the Medicare Outpatient SAF data with the Medicare National Carrier file data to examine outpatient utilization of health services provided by both institutional-affiliated providers and non-institutional providers.

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Summary: The POS files are created from the Online Survey and Certification Reporting System (OSCAR) database. The files contain an individual record for each Medicare-approved provider that is updated quarterly. These files include the following information related to participating institutional providers: Medicare provider number, name of facilities, geographical information (address), ownership structure, physical environment (size, bed numbers), physician and specialists information, other health professionals information, non-clinical staffing information, clinical services, accreditation information, and reimbursement information.
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Summary: The SCIMS collects data across the 14 federally-sponsored Model Spinal Cord Injury System Centers and follow-up data from 5 previously-funded centers. The National Spinal Cord Injury Statistical Center (NSCISC) has collected data from the SCIMS since 1986 that record dates of onset of injury from as early as 1972. Each SCIMS reports both general and specific research data to NSCISC. They are funded by the National Institute for Disability, Independent Living, and Rehabilitation Research (NIDILRR). The SCIMS provide comprehensive specialty services, from point of injury through rehabilitation and re-entry into full community life. In addition to collecting data immediately post-injury, the SCIMS collects years of follow-up data from their participants.
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Summary:

The SCIRehab is a 5-year, multi-center study based on Practice Based Evidence (PBE) approach which collects data related to inpatient rehabilitation process of care and outcomes for individuals with Spinal Cord Injury (SCI). The SCIRehab project collects detail information on specific intervention, duration of therapy, patient participation, caregiver role, social participation, and patient-centered outcomes including functional status and quality of life.

The data includes detailed information on discipline-specific rehabilitation interventions which are not recorded adequately by the clinicians in normal documentation during inpatient rehabilitation process. Six major US inpatient rehabilitation hospitals specializing in providing rehabilitation services for individuals with SCI were involved in collaborative research. They report point of care data of a patient with SCI and rehabilitation service outcomes to Craig Hospital in Englewood, Colorado.

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Summary:

The Survey of Adult Transition and Health (SATH) is a nationwide survey looking at the health of young people ages 19-23 in 2007. It is a follow-back survey of individuals whose parents were interviewed in 2001 for the National Survey of Children with Special Health Care Needs (NS-CSHCN). These children were 14 to 17 years of age in 2001 and had been identified as having a special health care need. The main goals of the SATH are to examine the current health status and health care needs of the young adults to better understand their transition from pediatric health care providers to adult health care providers.

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Summary: Swing Beds are rural skilled nursing facilities (SNF) or Critical Access Hospitals (CAH) participating in Medicare that are approved by CMS to provide post-acute skilled nursing services. The Swing Bed-Minimum data set (SB-MDS) is a subset of the Minimum Data Set (MDS) containing patient-level assessments for those admitted to “swing beds.” The data are primarily collected using a two-page assessment form and only include items required for reimbursement purposes, ongoing analysis of swing bed utilization under the SNF-PPS (prospective payment system), and tracking patient readmissions. Primary and comorbid condition “active diagnosis” information from claims files is also included. The SB-MDS includes patient-level demographic, clinical and facility-level information.
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Summary:

The NS-CSHCN provides a consistent source of data for all fifty U.S. states, the District of Columbia, and the U.S. Virgin Islands on the size and characteristics of the population of CSHCN. This survey provides detailed information regarding the prevalence of CSHCN as well as the demographic characteristics of these children and their families, their physical, emotional and behavioral heath, the types of health and support services they and their families need, and their access to and satisfaction with the care they receive. Trends can be compared across the waves of data collected.

Note that for 2016-2017 and beyond, the content of the NS-CSHCN is incorporated into the National Survey of Children’s Health (NSCH). 

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Summary:

The NSCH provides nationally representative information for children in ages from 0 -17 for all fifty states in the U.S., including District of Columbia and the U.S. Virgin Islands. Besides providing information on prevalence of chronic conditions and special healthcare needs, this survey provides information on access to medical homes, parental health, family interactions, as well as neighborhood factors impacting children's health. Trends can be compared across the waves of data collected.

Note that for 2016-2017 and beyond, the NSCH incorporates the content of the National Survey of Children with Special Health Care Needs (NS-CSHCN). 

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Summary:

Currently, there are 16 actively-funded Traumatic Brain Injury Model Systems (TBIMS) and 3 previously-funded TBIMS centers for longitudinal follow-up that collect detailed information about people with Traumatic Brain Injury (TBI) in their communities. Each TBIMS is involved in center-specific clinical trials, collaborative research, data collection, measuring long term outcomes and reporting data to the Traumatic Brain Injury Model Systems National Database (TBINDSC). The TBINDSC is the largest source of longitudinal TBI data, having originated in 1988 with many years of follow-up TBI data that includes information on acute rehabilitation. The objective of the TBI database is to provide data regarding evidence-based practice in TBI intervention, research, and long-term outcomes. Each center has a specific area of focus, for example TBIMS at Colorado and California focus on health, wellness, functional outcomes, and physical activity. The TBIMS at Ohio, Minnesota, and Virginia work in the area of employment and participation outcomes, while RIC Chicago is involved in the development of robotics technology.

Recently a joint agreement was made between VA polytrauma centers, TBI veterans health registry, and the TBINDSC to improve outcomes for persons with TBI.

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Summary:

The Young Children with Physical Disabilities (Seattle, Washington) study is one of three projects in the Communication of People with MR 2006 to 2012 Series, which focuses on identifying participant variables that predict success in increasing communication skills of individual with intellectual disabilities. The data for this study were collected to show that triadic eye gaze for joint attention can be established in very young children with moderate or severe motor impairments. Participants were infants 10-36 months of age with moderate-to-severe motor impairments who are nonverbal and not yet producing intentional communication signals. Participants were convenience sampled from birth-to-three centers in Seattle, Washington

It contains two datasets:

Dataset 1: Functional and Communication Assessments of Individuals with MR (n=48). Includes data on the results of the initial screening for inclusion. Data includes: Complexity of Communication Scale, a Functional Assessment, the Bayley Scales of Infant and Toddler Development, the Mullen Scales of Early Learning and the Communication and Symbolic Behavior Scales. 

Dataset 2 : Triadic Eye Gaze Intervention for Young Children with Physical Disabilities (n=18) participant selection for experimental intervention and control phase was based on criteria collected in Dataset 1 and contains data on Triadic Eye Gaze and Coordinated Joint Attention. The 18 participants, were randomly assigned to one of two groups: The experimental treatment group (n=9) received direct treatment for Triadic Gaze delivered by a research Speech-Language Pathologist in addition to standard practice. The control group (n=9) received standard practice. Children in both groups were observed in a play activity with an examiner approximately every 3 weeks to monitor Triadic Gaze learning. 

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Summary:

The Early Intervention Colorado (EI-CO) Participant Characteristics, Service Use, and Outcomes, Colorado, 2014-2016 data was collected as part of the Individuals with Disabilities Education Act (Part C) statewide early intervention (EI) systems for infants and toddlers with, or at risk for, developmental delays. The purpose of gathering these data was to describe children's diagnostic, social, and functional characteristics associated with access and use of core EI services.  The data are based on administrative information and were created in collaboration with a community partner in a large, urban EI program in Colorado, focusing on the EI population served by the program over approximately a 2 year period.

The database utilized the electronic data collected through the program for  2045 cases. It contains 44 variables; including child characteristics/demographics: race, ethnicity, language, sex, age, and developmental condition type, as well as EI service receipt, and Child Outcomes Summary (COS). In addition, a number of variables were derived that could be of importance to EI stakeholders when conducting clinical queries for quality improvement including EI service use intensity (i.e., hours per month) for all EI services, as well as discipline-specific (e.g., physical or occupational therapy) service use. 

EI service use includes the number of core services (sum of discipline-specific services received), number of EI hours, and duration of EI service (in months) and EI intensity (the number of all EI service hours per month). EI service use was also described by core discipline: Physical Therapy, Occupational Therapy, Speech Therapy, Psychology, or Developmental Intervention. For each core discipline, the researchers estimated 1) "any" discipline-specific service and 2) discipline-specific service intensity. 

Child Outcomes Summary (COS) are included in the data as well. COS is used by most states and measures functional performance for the purposes of EI care plan development and outcomes monitoring. COS scores have the potential to be a marker for discipline-specific EI service need and reflect difficulty with functional domains (e.g., cognition). COS scores  are based on the EI team consensus are are related to 1) having positive social relationships, 2) acquiring and using knowledge and skills, and 3) taking appropriate action to meet needs. Each COS score is on a 7-point scale, from 1=Very Early Skills (i.e., child does not use any immediate foundational skills related to this outcome) to 7=All Skills Expected (i.e., there are no concerns about the child's function in this area). 

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Summary:

The Emergence and Evolution of Social Self-Management of Parkinson's Disease study (SocM-PD) is a mixed-method (quantitative-qualitative) prospective cohort study of how people with Parkinson's disease and their primary caregiver (as available) naturalistically manage chronic disease, wellness and social life in their home and community.

This longitudinal study is focused on social self-management. Social self-management is defined as the practices and experiences that ensure personal social comfort while supporting mental and physical well-being. Parkinson's Disease offers a model for studying the effect of physical disease on the social self-management of daily life when physical symptoms affect fundamental social capacities. The study's objective is to understand the emergence and evolution of the trajectories of the self-management of the social lives of people living with Parkinson's disease. The central hypothesis is that expressive capacity predicts systematic change in the pattern of social self-management and quality of life outcomes.

The specific aims of the study are to: 1) characterize social self-management trajectories over the 3 year period; 2) estimate the degree to which expressive nonverbal capacity predicts the trajectory; and 3) determine the moderating effect of gender on the association between expressive capacity and change in social self-management.

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Summary: The Established Populations for Epidemiologic Studies of the Elderly (EPESE) is a longitudinal prospective study, funded by National Institute on Aging. The EPESE sample consists of non-institutionalized individuals age 65 and older in four regions: East Boston, Massachusetts; two rural counties in Iowa; New Haven, Connecticut, and central North Carolina. The purpose of the study is to understand the predictors of mortality, hospitalization, and risk factors for chronic diseases, functional decline, and admission to long-term care facilities. The study consisted of a preliminary baseline household interview of participants followed annually. Information from hospital/state records and death certificates are also included.
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Summary:

The Piedmont Epidemiologic Studies of the Elderly is a part of a multiyear study sponsored by the National Institute on Aging. ** This Piedmont EPESE data was gathered in a unique seventh follow-up (forth in-person interview) performed between May 1996 and November 1997 not performed for the other EPESE locations. This "extra" 7th wave data is not included in the main EPESE data. See the Established Populations for Epidemiologic Studies of the Elderly (EPESE) data directory entry for more information on the previous 6 waves performed at all 4 EPESE sites (including Piedmont).

The objectives of the EPESE project were to identify predictors of mortality, hospitalization, and admission in long-term care facilities and to examine risk factors for chronic diseases and disabilities.

The study design includes an initial baseline household interview and follow-up in a sample of non- institutionalized older adults of 65 years of the following counties of North Carolina: Durham, Warren, Franklin, Granville, and Vance. Unique to the Piedemont EPESE is the initial baseline sample included an oversampling of African Americans (accounting for 54% of the sample).

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Summary:

The Health and Retirement Study (HRS) is a nationally representative longitudinal panel survey conducted biennially. The study follows a cohort(s) of adults ages 50 years or older in the United States. The purpose of the HRS is to understand the health shifts in older adults and demographic changes in labor force participation at the end of their service. It provides detailed information on demographic characteristics, income, work, assets, housing, pension plans, health insurance, disability, physical health and functioning, cognitive functioning, and health care expenditures. The original study began in 1992 and follows up with interviews the respondent and their spouse or partner take every two years through using an in-depth interview questionnaires. A new cohort is added to the sample every six years.

In 1998, the original HRS was merged with Asset and Health Dynamics Among the Oldest-Old (AHEAD, born before 1923). In 1998, the HRS also included a Children of the Depression cohort (CODA, born 1923-1930) and a War Baby cohort (WB, born 1942-1947). In 2004, an Early Baby Boomer cohort (EBB, born 1948-1953) was added, and in 2010 a Mid Baby Boomers cohort (MBB, born 1954-1959) was added in 2010, and a Late Baby Boomers cohort (LBB, born 1960-1965) was added in 2016.

Off-year questionnaires are also submitted to a subset of HRS respondents. These include: the Consumption and Activities Mail Survey (originating in 2001), the Disability Vignette Survey (2007), the Health Care and Nutrition Study (2013), the Human Capital and Educational Expenses Mail Survey (2001), the Life History Mail Survey (2015), the Internet Survey (originating in 2003), and the Veterans Mail Survey (2013).

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Summary:

The Hispanic Established Populations for Epidemiologic Studies of the Elderly is a ongoing longitudinal study specifically focused on older Mexican Americans. The study is sponsored by the National Institute on Aging and conducted by the University of Texas Medical Branch, Galveston. The initial baseline household interview occurred in 1993 and follow-up in a sample of community-dwelling Mexican-American older adults of 65 years living in five southwestern states of the United States: Arizona, California, Colorado, New Mexico, and Texas. The interviews are conducted in both Spanish and English. The primary goal of the Hispanic EPESE is to explore prevalence of disability, physical functioning, functional impairments, frailty, mental condition, and risk factors for mortality and morbidity in older Mexican Americans.

As a part of Wave 7 an additional "Informant interview" was attempted with the person the participant identified they were "closer to" or "depend(ed) on the most for help." About two thirds of these informants were a child of the participant. These informants were contacted and interviewed regarding the health, function, social situation, finances, and general well-being of the Hispanic EPESE respondents. Information was also collected on the informant's health, function, and caregiver responsibilities and burden. 

Note: the data for each individual wave is in a separate dataset

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Summary:

The Language Development of Non-verbal Children Age 3 Years through 7 Years in the Kansas Metro Area is one of the three projects in the Communication of People with MR, 2006 to 2012 Series, focusing on identifying participant variables related to success in improving communication skills of young individuals with intellectual disabilities (see "other related datasets" below). Select preschool-age children with intellectual and developmental disabilities, including those with autism and Downs Syndrome were identified as candidates for augmentative and alternative communication (criteria included 8 specific requirements for participation). Children were recruited through school districts in and near the Kansas City metropolitan area, Kansas. 

The data for this study were collected to determine how acquisition of symbolic communication using Voice Output Communication Aid (VOCA) affects the development of successful communication exchanges. Dataset 1 is limited to a sample of English speaking children. Dataset 2 includes limited baseline assessment measures of a small sample of Spanish speaking children.

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Summary:

The Medical University of South Carolina Stroke Data (ARRA*) was a NIH funded study conducted in 2011-12. It was designed to delineate the cause/effect relationship between neural output and the biomechanical functions executed in walking. Subjects included 27 post-stroke patients (at least 6 months post-stroke) and 17 healthy controls.

Each subject walked on a treadmill at their self-selected walking speed as well as completing a randomized set of four steady-state mobility capability tasks: walking at maximum speed, and walking at self-selected speed with maximum cadence, maximum step length, and maximum step height. Kinematic, kinetic, and electromyography (EMG) data were collected.  The data collected allow scientists interested in EMG analyses of hemiparetic walking to have a test set for their analyses.

The data collected includes demographics, clinical assessments, kinetic (from treadmill force plates), kinematic (from active markers), EMG and Over-ground spatial temporal measures (GaitRite Platinum Walkway).

* Documentation refers to the study as ARRA: American Recovery and Reinvestment Act 

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Summary:

The Mexican Health and Aging Study (MHAS) is an ongoing, nationally representative longitudinal study of adults in Mexico aged 50 years or older and their spouse and/or partner. The MHAS was designed to prospectively evaluate the impact of disease on the health, function and mortality of adults over the age of 50 in both urban and rural areas of Mexico. The objective of the study is to examine the aging process and its disease and disability burden in a large representative panel of older Mexicans, using a wide socioeconomic perspective. The study protocols and survey instruments are highly comparable to the Health and Retirement Study (HRS).

In 2012, a new sample of participants was added to the ongoing cohort interviewed in 2001 and 2003 who remained in the study for the third follow-up interview. A subsample of 2,086 participants provided data on biomarkers: HbA1c, total and high-density cholesterol, gait speed, and vitamin D.

The fourth wave of data collection began in 2015 following up with the approximately 18,000 study participants. A sub-sample (n=3,000) of this wave will receive a visit in 2016 to perform an in-depth cognitive assessment.

As of 2021 a Harmonized End of Life dataset is also available:

https://g2aging.org/?section=module&moduleid=2903 

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Summary: The National Health and Aging Trends Study (NHATS) collects individual level information on a nationally representative sample of Medicare beneficiaries ages 65 and older through in-depth interviews. It is a longitudinal study that began in 2011 with yearly follow-up of each participant. NHATS is designed to collect data on late life trends, functional decline, and impact of disability on socio-economic dynamics of individual functioning, and burden on family and society. The data include a broad set of activities including self care, care giving, environment, technology usage, types of mobility device, early life status, household, income, medical, and participation in productive/social activities.
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Summary:

The NLTCS is a detailed longitudinal survey that permits observation of changes in the health and functional status of adults ages 65 years and older. The survey also tracks health care expenditures, Medicare services use, and the availability of formal and informal caregiver services. Older adults without impairment living in communities and those residing in institutions are represented in the sample. The survey divides the sample into three cohorts as individuals without disabilities, individuals with disabilities living in the community, and individuals with disabilities living at institutions.

Data can be linked with Medicare files such as the Carrier Claims Record, Clinical Labs, Denominator File, Durable Medical Equipment, Home Health Agency, Hospice, Inpatient, Outpatient, Skilled Nursing Facility, and Vital Statistics File. The NLTCS concluded in 2004.

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Summary:

The Requests for Assistance with Adaptive Switches from Individuals with Severe Communication Impairments study is one of the three projects in the Communication of People with Mental Retardation (MR) , 2006 to 2012 Series, which focuses on identifying participant variables that predict success in increasing communication skills of individual with intellectual disabilities. The study data were collected to show how children and adults with profound multiple impairments can learn to request assistance with adaptive switches and examine the change from pre-intentional to intentional symbolic communication.

The study examined 77 respondents, ages 2 through 71, and administered three assessments:

• Communication Complexity Scale (CCS) up to 3 points in time
• Mullen Scales of Early Learning (n=22)
• Functional vision assessment (n=76)

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Summary: The SRUP study is a longitudinal study of stroke patients admitted to inpatient rehabilitation facilities, designed to examine the effects and interactions of positive emotion and social networks in the motor and cognitive recovery of stroke patients in underserved groups. Data was collected at four points in time: at admission and discharge from the rehabilitation facility as well as follow-ups at 3 and 12 months post discharge.

The study was designed at the University of Texas Medical Branch. Inpatient and follow up data were collected by the IT Health Track.
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Summary:

The Survey of Pathways to Diagnosis and Services is a nationally representative survey about children with special health care needs aged 6 to 17 years old who were ever diagnosed with autism spectrum disorder, intellectual disability, or developmental delay. It was conducted in 2011 as a followup to the 2009-10 National Survey of Children with Special Health Care Needs (NS-CSHCN).

It was designed to increase the understanding regarding the processes by which these learning and developmental conditions are diagnosed and treated. The interview asked parents/guardians about the context of the diagnosis, symptom emergence, the child's current diagnosis status, educational services, and clinical treatments/interventions to address the developmental problems as well as their perspectives and concerns. A additional data collection effort, a Self Administered Questionnaire (SAQ) included a 49-item Children’s Social Behavior Questionnaire, designed to describe the severity and pattern of social deficits and other behaviors characteristic of children with ASD, especially in milder ASD cases.

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Summary: The Well Elderly 2 dataset is designed to evaluate the effectiveness of an activity-based lifestyle intervention on health related quality of life, depression, cognition, life satisfaction and perceived physical and mental health of ethnically diverse community living elders. The study was a semi cross-over randomized intervention trial, with follow up to 18-24 months.

The study was conducted by the University of Southern California in collaboration with the National Institute on Aging.
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Summary:

SAGE is a longitudinal study of adults over 50 years and older living in six countries: China, Ghana, India, Mexico, Russian Federation and South Africa. There is also a comparison sample of adults aged 18-49 years from each country.  It is part of an ongoing effort to compile comprehensive longitudinal information on the health and well-being of adult populations and the aging process. Participants are a nationally representative sample for each country. As of 2017 there were 2 waves of data available in addition to the baseline data (collected in 2002-2004).  Training  for Wave 3 data collection began in Feb 2017.

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Summary:

These data are compiled from a five-country United States Agency for International Development (USAID)-funded wheelchair provision and disability inclusion project known as ACCESS (Accelerating Core Competencies for Effective Wheelchair Service and Support). In this project, World Vision 1) partnered with wheelchair technical experts and service providers to provide wheelchairs through the World Health Organization (WHO) 8 Steps and 2) worked to ensure social inclusion of wheelchair users. The data includes information related to referral screening, client assessment, product provision or improvement, as well as a pre- and post-social inclusion scale.

Survey data collected included: age, gender, employment, education, participation in community groups, health insurance or financial assistance, the reason(s) a wheelchair is needed, social inclusion, assessment and prescription of assistive device(s). Follow-up data include type of wheelchair and modifications provided, maintenance or repairs provided (wheelchair service records), wait time for wheelchair receipt, if the wheelchair user felt they were treated respectfully and received adequate training and repair skills.

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Summary: The AHA annual survey of hospitals in the United States is administered online. The survey is comprised of questions related to the following domains: organization structure (e.g., ownership status, services provision, and national identifiers); facilities and services provided (by institutions themselves, through contracts, by other partnering facilities); total facility beds, utilization, finances, and staffing (beds and length of stay, source of payment, revenues and expenses, assets, non-reimbursed care, information technology investment, staffing information); community benefits; and management diversity. The AHA can be used independently or through linkages with other CMS and non-CMS datasets to report trends, performance, and quality indicators.
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Summary:

The American Housing Survey (AHS) is the nation's most comprehensive housing survey. It is a nationally representative longitudinal residential housing unit survey collected by the U.S. Census Bureau and sponsored by the Department of Housing and Urban Development (HUD). A housing unit is defined by the AHS as a house, apartment, group of rooms, or single room occupied or intended for occupancy as separate living quarters. The survey collects data on occupant owned, rental, and vacant housing units. The survey respondent is a knowledgeable household member (renter or owner) age 16 or older. In the case of a vacant housing unit, a landlord, owner, real estate agent, or knowledgeable neighbor is asked to provide the data. 

Although the AHS's primary focus is on the housing unit, it also gathers extensive information on occupant characteristics including  the ACS 6 question disability series as of 2009. This combination of data allows understanding of how occupant characteristics relate to housing characteristics. The longitudinal design permits HUD to see how housing units and people residing in those units change over time and can be used to monitor housing supply and demand, as well as changes in housing conditions and costs, in order to assess housing needs.

The survey is conducted every two years and is comprised of two parts: permanent core questions asked in every survey and topical modules that rotate in and out of the survey. The core survey collects information on a wide range of housing topics, including housing costs and value, mortgage characteristics, household income and demographics, disabilities, housing size and amenities, quality, migration, and plumbing, water, and sewage. The survey also includes a number of items relating to the resident's assessment of neighborhood "quality" such as quality/type of nearby buildings and their condition, trash, school quality, transportation availability, and crime. 

The topical modules cover a wide range of topics. The 2017 topical modules included 1) commuting to work, 2) evictions, 3) delinquent payments and notices, and 4) emergency and disaster preparedness. To maximize the number of module topics covered beginning with the 2013 AHS, HUD and the Census Bureau adopted a strategy of splitting the AHS sample in two groups, then administering some topical modules to Group 1 and some modules to Group 2.

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Summary:

Release 1.2* of the Anatomical Tracings of Lesions After Stroke (ATLAS) Dataset is a collection of 304 T1-weighted MRIs (Magnetic Resonance Images) with manually segmented diverse lesions and metadata. ATLAS is designed to provide researchers with a standardized training and a testing dataset for lesion segmentation algorithms on T1-weighted MRIs. It can also be used to compare different lesion segmentation techniques.

The images were collected across 11 research groups worldwide participating in the ENIGMA Stroke Recovery Working Group consortium.  Brain lesions were identified and masks manually drawn on each individual brain MRI using MRIcron, an open-source tool for brain imaging visualization. Quality control was performed on each lesion mask by a second tracer, including categorizing lesions.  Additional metadata includes qualitative descriptions of the type of stroke, vascular territory, and intensity of white matter disease developed by an expert neuroradiologist.

*Version 1.1 was updated to v.1.2 on 11/27/2018  with corrections to images in Cohorts 1 and 2 in the previous dataset. The study also included a new version of the metadata data file. The ICPSR codebook has also been updated based on that file.

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Summary: CLSA is an ongoing, national, longitudinal study following approximately 50,000 adults 45-85 years old living in Canada and is a strategic initiative of the Canadian Institutes of Health Research (CIHR). Recruitment began at multiple sites from 2010 to 2015 . Participants will be followed for at least 20 years with data being collected every 3 years. The CLSA collects information on biological, medical, psychological, economic, social and lifestyle factors. It is designed to develop a better understanding of how those factors affect health and the development of disease and disability as people age. The CLSA will be linked to health administration databases (94% participants consented) that will provide complimentary information regarding medication use, health service utilization, and mortality.

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ELSA is a longitudinal study of a nationally representative sample of the English population over age 50. There are currently 7 waves of data spanning over 14 years. The primary purpose of the ELSA is to collect multidisciplinary, longitudinal data to enable the investigation into the causal processes and health trajectories associated with aging. The sample was drawn from respondents to the Health Survey for England (HSE). The HSE provides baseline data prior to the first wave of the ELSA study on respondents' health including details of morbidity, lifestyle, diets and blood samples. ELSA included a life history interview designed to document major life events from childhood to current time including retrospective self reported health and disability.

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This study sought to evaluate the functional independence in children at a Centers for Pediatric Rehabilitation Teleton (CRIT) facility in Guanajuato, Mexico through the use of the Functional Independence Measure Instrument (WeeFIM) for children (0-3 Module). WeeFIM is an easily administered scale for assessing independence across 3 domains based on a conceptual framework by the World Health Organization of pathology, impairment, disability and handicap, and the “burden of care.” The objective of the study is to compare the characteristics of children who use assistive technology (AT) specifically: wheelchairs, walkers, prosthetics and orthotics, with children who do not use AT.

The dataset was generated from electronic health records in May 2013  for secondary analysis of de-identified data. The goal of CRIT was to improve social integration for children with disabilities in Mexico through comprehensive rehabilitation services, including physical therapy, occupational therapy, neurotherapy, speech therapy, physical and rehabilitation medicine, psychology, social integration, and school for parents. Researchers also sought to determine what factors were related to the functional independence of children with disabilities.

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A hospital service area (HSA) is a collection of ZIP codes whose residents receive most of their institutional care from the hospitals in that area. The HSA were defined by assigning ZIP codes to the hospital area where the greatest proportion of their Medicare residents were hospitalized. Hospital referral regions (HRR) represent regional health care markets for tertiary medical care. HRR were defined by assigning HSA to the region where the greatest proportion of major cardiovascular procedures and neurosurgeries were performed.

The following data sources are used for computing HAS/HRR: the Centers for Medicare and Medicaid Services (CMS), U.S. Census Bureau, American Hospital Association, American Medical Association, and the National Center for Health Statistics.

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The Impact of the World Health Organization's (WHO) 8-step Wheelchair Service Provision in Indonesia, 2013-2014 includes data collected in Indonesia by United Cerebral Palsy (UCP) Wheels for Humanity and the University of Pittsburgh. The purpose of the study was to investigate how wheelchairs provided to both adults and children with mobility impairments related to mobility, participation in society, quality of life, wheelchair skills, wheelchair maintenance, and satisfaction with mobility as compared to a control group.

The study used a convenience sample of  344 children and adults. Approximately half  had received a wheelchair and the remainder were on a waiting list to receive one (controls).  Interviews were conducted at baseline and a 6 month follow-up to collect the following data: Demographics and wheelchair use questions, the World Health Organization Quality of Life-BREF, Functional Mobility Assessment, Craig Handicap Assessment Recording Technique Short Form. A Wheelchair Assessment Checklist and Wheelchair Skills Test Questionnaire were administered at follow up.

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The Interactive Autism Network (IAN) data is based on online surveys collected from a network of children and adults with autism spectrum disorder (ASD) and their families accessed through IAN web-based portals. Surveys are completed directly by either parents/caregivers of individuals with Autism, or adults with Autism. IAN participants are recruited primarily through social media, ASD related events, and networking between families of persons with ASD. Participants have the opportunity to complete baseline questionnaires, standardized instruments as well as one-time surveys. 

The IAN surveys collect a variety of data including items related to diagnosis, behavior, family, environment, and services received as well as special one-time topical surveys. Participating parents report on their child’s progress over time and adults with ASD share information about their experiences and needs. This approach provides researchers with a number of participant and participant proxy reported outcomes. 

IAN data serves as a research database as well as a research registry to help connect people with autism and their families to clinical research studies.  Based on the information that families and researchers provide, IAN works to match families to research studies recruiting around the country. 

Note: The IAN research registry closed on June 30, 2019 and are no longer enrolling participants or collecting new data. The de-identified data set is available to researchers on a limited basis (see data access below).

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The primary goal of this project was to determine the neurobiologic basis for elevated activity in the contralesional primary motor cortex (PMC). In healthy individuals, unimanual movement (with either the left or right hand) is associated with activity in a network of predominantly contralateral brain regions, including the primary motor cortex. This laterality is often compromised following a middle cerebral artery (MCA) stroke. Neuroimaging studies of these patients have shown that unimanual movements with the effected hand are associated with elevated blood oxygen level dependent (BOLD) signal in both the lesioned and the nonlesioned primary motor cortices. Elevated activity in the contralesional PMC is well-established in chronic stroke patients and is associated with poor motor rehabilitation outcomes. Yet the neurobiologic basis for this aberrant neural activity is equivocal.

One factor that may contribute to elevated activity in the contralesional PMC is increased cortical excitatory tone within the contralesional hemisphere. Another factor that may contribute to elevated activity in the contralesional PMC is a loss of transcallosal inhibition between the hemispheres. 

These two explanations were tested through a cross-sectional investigation of neural function in left MCA stroke patients with mild-moderate right upper extremity impairment and controls matched for age and cardiovascular risk factors. To assess the clinical relevance of these factors on motor dysfunction, the researchers performed a detailed kinematic assessment of movement efficiency, smoothness and compensation.

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JSTAR is a longitudinal survey of the Japanese aging population 50 years and older living in 10 metropolitan areas. It is designed to be comparable with the U.S. Health and Retirement Study, the English ELSA, and the European SHARE studies. The study began in 2007 and subsequent follow-up was conducted in 2009. In 2009 new samples were recruited from two additional municipalities. The 2011 survey included follow-ups for the 2007 and 2009 sample as well as new samples from three additional municipalities.

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The Korean Longitudinal Study of Aging is an ongoing nationally representative longitudinal study of the South Korean household population 45 years and older. Sampling was based on a multistage stratified probability framework for each census district. 

The first survey was conducted in 2006 and participants are followed every 2 years. The primary purpose of the study is to collect data that will assist in implementing social and economic policies for the aging population.

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The LASI is a longitudinal study of a nationally representative sample of adults 45 years and older living in India. Collection for the first wave of data started in 2016 and has not been completed yet (2017). The study is based on a pilot project conducted in 2010. The primary purpose of the study is to collect data on aging health, social support and economic security that will inform future policies. It takes into account features unique to India including institutional and cultural characteristics.

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The PEDSnet Data is comprised of health and healthcare information from over 6 million children and youth. The data come from eight of the nation's largest pediatric health systems and includes information from all types of encounters: outpatient (primary care and specialty care), emergency department, surgical centers, and hospitals. The dataset contains information from over 100 million visits and includes patients with every type of pediatric disorder, and every pediatric specialty that provides services to children. Sources of data include electronic health records, health insurance claims, and child and parent surveys. 

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Summary: The Panel Study of Income Dynamics (PSID) is a longitudinal household survey that began collecting annual data in 1968, and has done so every two years since 1997. It follows a nationally representative sample of over 18,000 individuals living in 5,000 families in the U.S.; as of 2016, the sample had grown to 24,000 individuals in 10,000 families. Information on these individuals and their descendants has been collected continuously for nearly 50 years. The PSID collects data regarding employment, income, wealth, expenditures, health, marriage, childbearing, child development, philanthropy, education, and numerous other topics.
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The Retraining Walking Over Ground in a Powered Exoskeleton After Spinal Cord Injury is a mixed-methods study using both observation and interviews. It was designed  to determine quantitative and qualitative outcomes in a cohort of individuals with chronic, spinal cord injury, who learned to use the ReWalk exoskeleton to walk. Researchers determined the training dosage required for walking proficiency, the sensory and motor changes in the nervous system with the training, and the perspectives of the participants with respect to both the training and the device. It was a prospective cohort study with measures taken before, during, immediately after training, and 2-3 months after training was completed.

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The Stroke Initiative for Gait Data Evaluation (STRIDE) is an initiative based at the University of Southern California to create an inter-institutional, public database containing de-identified demographic and kinematic, kinetic, and spatiotemporal measures assessed via gait analysis in individuals post-stroke, to provide a larger and more heterogeneous research dataset than that typically amassed at a single institution. The purpose of the study was to understand how persons post-stroke generate symmetric steps and how the resulting gait pattern relates to the metabolic cost of transport. Data was collected at the following institutions: Johns Hopkins University, University of Southern California, University of Pittsburgh and Emory University.

55 persons post-stroke walked on an instrumented treadmill under two conditions: preferred walking and symmetric stepping (using visual feedback). Kinematic and kinetic data was collected during both conditions via three-dimensional motion capture, as well as metabolic data.

The data in STRIDE can be used to run pilot analyses and power calculations for research studies, design and validate statistical models to test associations between gait variables, provides data for simulation-based biomechanical studies in stroke, and provides data to assess the reproducibility of research findings.

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SHARE is a multidisciplinary, cross-national, longitudinal study of the European  population over 50 years old. 28 European countries plus Israel participate in the SHARE study. The study covers the interplay between economic, health, and social factors in shaping older people’s living conditions. It also aims to address these issues cross-nationally. The wave 3 SHARELIFE survey collected life history calendars designed to identify prominent events in each participant's life. Health measurements include self-reports as well as four physical performance measurements: grip strength (GS), walking speed (WS), peak-flow (PF) and chair stand (CS). Six waves of data have been released with wave 7 data (collected in 2017) expected to be released in spring 2019.

Blood spot samples were collected for 24,000 individuals across 12 SHARE countries in wave 6.  Blood spot analysis will focus on markers related to diseases and conditions typical for older people and/or are influenced by lifestyle,including cardiovascular diseases (CVD), diabetes, and markers for stress and cognition. Biomarker data may be available sometime in 2018.

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The Autism Treatment Network Registry (ATN) is a collaboration between Autism Speaks and a network of hospitals, physicians and researchers at 17 sites across the U.S and Canada. It is centered around clinical and health related research  and developed to improve care for children with autism spectrum disorder (ASD) and promote best practices in interdisciplinary medical care. Behavioral and medical data from the care and outcomes of children seen in the network facilities is stored in the registry database. The registry contains de-identified data aggregated across all sites on over 7,000 children diagnosed with ASD ages 2 – 17 ½ .

Although primarily cross sectional data the ATN also includes some longitudinal follow-up data for a subset of 672 consenting to participate in the Registry Call Back Assessment (RCBA) collected between 2015-2017. The RCBA included a battery of assessments designed to track the trajectory of major medical co-morbidities (sleep, GI distress, anxiety, hyperactivity and anthropometrics) and their relationships with behavioral and functional outcomes. RCBA data includes: physical exam, diagnoses and problems, medical and behavioral treatment, and behavioral, cognitive, and communication measures. RCBA data will become available on 1/18/2019.

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The purpose of this study was to characterize wheelchair tiedown and occupant restraint system (WTORS) usage on paratransit vehicles. A retrospective review of 476 on-board video monitoring recordings of trips by passengers seated in Wheeled Mobility Devices (WhMDs) was conducted. Data was collected from March through October, 2012. The study was conducted using two paratransit vehicles within one metropolitan area. Along with general information about the WhMDs and other equipment used by the passengers, details of the passengers' access and use of the vehicle were recorded. Details of WTORS usage including number of tiedowns and restraints used, attachment points to the WhMD and the vehicle floor, and any improper usage were recorded. Instability of the WhMD and incidents observed while the vehicle was in motion, along with contributing factors, were recorded and described.

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The Wheelchair Use and Services study surveyed a total of 852 adult basic manual wheelchair users in Kenya and Philippines. The objective was to examine whether wheelchair service receipt is associated with successful wheelchair use among adult, basic manual wheelchair users in less resourced settings. The sample was of wheelchair users and included equal numbers of those who had received services and those who had not received services from wheelchair-distribution entities. Wheelchair-use-related outcomes assessed included daily wheelchair use, falls, unassisted outdoor use and performance of activities of daily living (ADL).

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The Social Security Administration (SSA) utilizes data from the Survey of Incomeand Program Participation (SIPP) for various program purposes. However, SSA determined that the redesigned 2014 SIPP did not contain the information needed to support ongoing SSA programs. To address this lack of data, SSA funded a separate "follow-on" supplement survey of the 2014 SIPP respondents. Topics included in the Supplement primarily focus on the economic and social situation of people with disabilities and people in, or approaching, retirement. The supplement uses questions selected from previous SIPP panel topical modules regarding functional limitations and disability for adults and children, work disability, conditions causing the limitations, as well as income, retirement expectations, pensions, retirement accounts, and marital history. 

The U.S. Census Bureau conducted the Social Security Administration Supplement (SSA Supplement) on behalf of the SSA. The sample consists of households that completed 2014 Wave 1 SIPP interviews. Data users can merge the 2014 SIPP data with the SSA Supplement data to examine the economic and social situation of older or disabled Americans.

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The American Community Survey (ACS) is an annual survey conducted by the U.S. Census Bureau that collects information on a sample drawn from the U.S. institutionalized and non-institutionalized populations and Puerto Rico (Puerto Rico Community Survey – PRCS) The survey covers a broad range of topics including: age, sex, race, family and relationships, income and benefits, health insurance, education, veteran status, disabilities, as well as housing characteristics.

The ACS surveys approximately 3 million addresses in the United States annually, as well as a 2.5 percent sample of the population living in group quarters and 36,000 addresses in Puerto Rico. In 2010, pooled years of the ACS replaced the decennial Census long form. The objective of ACS is to provide federal, state and local governments with up to date information help to plan investments and services.

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The Current Population Survey (CPS) is a survey conducted by the U.S. Census Bureau for the U.S. Bureau of Labor Statistics (BLS) to provide workforce measurements including employment, unemployment, earnings, and hours of work. It collects a variety of demographic characteristics including age, sex, race, marital status, and educational attainment, as well as occupation and industry of employment. Supplemental questionnaires are occasionally fielded to produce estimates on various topics including school enrollment, income, previous work experience, health, employee benefits, and work schedules. A disability supplement was fielded in May 2012.

A work limitation disability screener question was first included in 1981 in the March Supplement. A variation on the ACS six-question disability sequence was added in June 2008. The 2014 redesign of the March Supplement included a rephrasing of the work limitation disability question that will be used going forward.

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The Current Population Survey (CPS) - Disability Supplement was conducted in July, 2019 and May 2012 by the Census Bureau for the Bureau of Labor Statistics (BLS). It was a supplemental survey to the Current Population Survey (CPS) designed to collect data in specific areas related to the employment of persons with disabilities. Topics include: labor force participation, work history of persons with disabilities, the types of employment barriers faced, workplace accommodations requested and provided. Also collected data regarding participation in, and helpfulness of employment assistance programs and participation in financial assistance programs. 

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The National Longitudinal Surveys (NLS) are a set of surveys sponsored by the Bureau of Labor Statistics,  and are designed to gather information over time regarding the labor market experiences of different cohorts. The NLSY97 (and its predecessor the NLTSY79) was designed to be nationally representative, and includes 8,984 transition aged youth (ages 12-16 as of Dec. 31, 1996) in the United States focusing on transition from school to work and adulthood. The NLSY97 contains extensive information on the youths’ education such as high school transcripts, as well as data on their family, community backgrounds, and eventual labor market participation. The data include measures of knowledge and skills in multiple areas including reading and mathematics. The NLSY97 data permit the examination of the influence of schooling and other environmental factors on labor market participation and career establishment as well as government program participation and family formation. As of 2014 the cohort are ages 29-31 and data collection is ongoing. There is also data available for the NLSY97’s predecessor, the NLSY79, which is a similar ongoing study that follows a cohort of young adults who were ages 14-22 in 1979 (ages 49-57 in 2014). Note that the disability and health condition data is more limited early on in the 1979 study (for more information see:   https://www.nlsinfo.org/content/cohorts/nlsy79/ ).

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The Survey of Income and Program Participation (SIPP) is a nationally representative longitudinal panel survey conducted by the U.S. Census Bureau. It collects a wide variety of information including the source and amount of income, labor force details, program participation and eligibility, and general demographic characteristics including a number of health and disability measures. It measures the effectiveness of existing federal, state, and local programs, and estimates future costs and coverage for government programs, such as food stamps. The SIPP provides statistics on the distribution of income and measures of economic well-being in the U.S.

The original survey was fielded three times a year during 1984-2008 with a four-month reference period. This version of the SIPP had core wave files and detailed topical modules.

A significant redesign was instated in 2014. The reengineered 2014 SIPP interview is conducted annually for four years with a 12-month reference period. The main survey incorporates topical module content, although its coverage is less extensive. The benefit is that longitudinal trends in key variables will be available. Going forward, the questionnaire will contain 12 disability measures: the six-question functional limitation sequence from the ACS, covering difficulties with hearing, seeing, cognitive activities, ambulatory activities, self-care activities, and independent living activities; three child functional disability questions; and three work disability questions.

Note that SSA worked with Census to develop a one time SSA Supplement to the 2014 SIPP that collected much of the detailed disability information dropped in the re-engineered 2014 SIPP.

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