Rehabilitation Dataset Directory: Dataset Profile

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. 

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

Patient-Centered Outcomes Research Institute

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

NA

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.

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

Over 6 million individuals, 2009 to present.

Individual/Patient

North America

United States

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

State & Zip code

Children/Youth

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)

2009 - present

Updated on a quarterly basis

• Very large sample - over 6 million, allows examination of rare pediatric conditions:
• 675 diagnoses with over 10,000 children per diagnosis
• 2,278 diagnoses with over 1,000 children per diagnosis 
• Diagnosis mix of chronic 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. 

• 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

https://pedsnet.org/

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 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.
  

ATLAS -a data exploration tool that PEDSnet uses for preparatory to research queries, terminology code-set formation, and exploration of the full PEDSnet database.

ATLAS Resources: https://pedsnet.org/data/atlas-resources/

https://pedsnet.org/research/publications/

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/

• National Children’s Study Archive
• National Institute of Child Health and Human Development Data and Specimen Hub