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Rehabilitation Dataset Directory: Dataset Profile

Dataset: PEDSnet (PEDSnet)

Basic Information
Dataset Full Name PEDSnet
Dataset Acronym PEDSnet
Summary

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. 

Key Terms

Pediatric care, Child, Young adult, Conditions, Medications, Procedures, Lab results, Encounters, Electronic Health Record (EHR), Electronic Medical Record (EMR), PROMIS® (Patient-Reported Outcomes Measurement Information System), Longitudinal, Insurance

Study Design Longitudinal
Data Type(s) Administrative
Clinical
Survey
Sponsoring Agency/Entity

Patient-Centered Outcomes Research Institute

Health Conditions/Disability Measures
Health Condition(s)

 ICD-9/10 diagnostic codes, SNOMED-CT codes

Disability Measures

NA

Measures/Outcomes of Interest
Topics

Outpatient encounters (~75 specialist visit types), Inpatient admissions, Emergency department encounters, Anthropometrics, Vital signs, Providers, Diagnoses, Procedures, Prescribed medications, Dispensed medications, Laboratory test results, Visit payer, Drug exposure, Condition occurrence, Procedure occurrence

See Data Domains document for more details on topical coverage and potential research utility.

Sample
Sample Population

Patients ages 0 to 24 years old with inpatient, outpatient, lab test or emergency department (ED) admission at the 8 participating sites. 

Sample Size/Notes

Over 6 million individuals, 2009 to present.

Unit of Observation

Individual/Patient

Continent(s)

North America

Countries

United States

Geographic Coverage

Participating Pediatric Health System Sites:

  • Boston Children’s Hospital
  • Children’s Hospital Colorado
  • Children’s Hospital of Philadelphia
  • Cincinnati Children’s Hospital Medical Center
  • Nationwide Children’s Hospital
  • Nemours Children’s Health System
  • St. Louis Children’s Hospital
  • Seattle Children’s Hospital
Geographic specificity

State & Zip code

Special Population(s)

Children/Youth

Data Collection
Data Collection Mode

Primarily based on standardized/harmonized Electronic Health Records (EHR) from participating hospitals. 

Parent/patient survey data may be included : PROMIS® (Patient-Reported Outcomes Measurement Information System)

Years Collected

2009 - present

Data Collection Frequency

Updated on a quarterly basis

Strengths and Limitations
Strengths
  • Very large sample - over 6 million, allows examination of rare pediatric conditions:
  • The Data Coordinating Center will provide a service to researchers who would like to obtain counts or cross-tabulations of patients or events in preparation for development of a research project proposal or use in a descriptive study. 
Limitations
  • Discrete variables directly related to disability are limited
  • Majority of sample comes from regions around each member institution - primarily 12 states (includes about 200,000 patients from outside site catchment areas) 
  • Pediatric dataset with limited follow-up into young adulthood
  • In-depth data request process
    • Research proposals require at least two PEDSnet partners, i.e. Co-PIs, located within a PEDSnet institution or network.
    • Proposed research concept must align with the PEDSnet mission and vision.  
    • Data access fee varies with complexity of requested dataset
Data Details
Primary Website

https://pedsnet.org/

Data Access

Description, instructions and link to request forms:

https://pedsnet.org/research/access-pedsnet/


PEDSnet Policies Handbook: Accessing PEDSnet resources:

https://pedsnet.org/documents/35/PEDSnet_Policies_Handbook_Section_5_Accessing_PEDSnet_Resources.pdf

Data Access Requirements

Data Use agreement, $ Cost:

  • PEDSnet Collaboration Request Form takes 4-6 weeks for review, and requires administrative approval and proof of resources/personnel adequate to complete the project.
  • Research proposals require at least two PEDSnet partners, i.e. Co-PIs, located within a PEDSnet institution or network.
Summary Tables/reports

Basic demographics and chronic conditions prevalence:

https://pedsnet.org/data/data-network-summary/

Data Components
Selected papers
Other Papers

https://pedsnet.org/resources/publications/

Technical

PEDSnet: a National Pediatric Learning Health System (basic background)

https://pedsnet.org/documents/53/Forrest_et_al_PEDSnet_LHS_J_Am_Med_Inform_2014.pdf

Data Domains:

https://pedsnet.org/documents/45/Data_Domain_Descriptions_v6_with_text_20161005_BIgfGtu.pdf    

Common Data Model:

https://pedsnet.org/data/common-data-model/

Resources:

https://pedsnet.org/resources/


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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).

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Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.

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