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More than 200 elements and 19 data domains

Summary Count
Total Unique Diagnosis 53,835
Total Unique Lab Results 10,023
Total Unique Procedures 42,489
Total Unique Medication 27,424
Total Outpatient ED Visit 110,382,829
Total Outpatient ED Visit Unique Patient Count 8,224,922
Total Inpatient Visit 2,345,734
Total Inpatient Visit Unique Patient Count 1,039,568
Payer Plan 2,670

Geographic Diversity

The greatest density of children seen in PEDSnet come from the regions around each member institution, together accounting for 12 states. However, the speciality referral bases for these medical centers are national and international in scope. As a consequence, the PEDSnet core database includes over 200,000 children from outside these primary catchment areas. Together these populations provide opportunities to learn about larger cohorts of patients with rare disease, as well as to examine both demographic and clinical diversity in care for more common diagnoses.

Diagnosis Mix

Children and families come into contact with PEDSnet institutions for a wide variety of reasons, ranging from routine well-child care quaternary management of rare and complex illnesses.   A survey of the most common diagnoses in the population as a whole highlights reflects prevalence of common pediatric conditions from birth through adolescence.  

Because of its overall size, PEDSnet also offers an opportunity to reach substantial groups of patients with less common diagnoses.  In our current population, groups of over 10,000 children are affected by each of 675 different diagnoses, and and additional 2,278 diagnoses affect at least 1,000 children. From a research perspective, these cohorts make it possible to learn about variations in natural history or response to treatment, and often to identify important issues that cannot be detected in smaller cohorts.  Equally important,  PEDSnet provides a way for researchers interested in rare conditions to establish dialogues with patients and families affected by these conditions, in order to develop more effective research partnerships.

Chronic Conditions n Prevalence per 10,000
Seizure Disorder 280,258 322.4
Asthma 790,106 909.0
Type 1 Diabetes 57,058 65.6
Inflammatory bowel disease (Ulcerative Colitis + Crohn's Disease) 30,394 35.0
Duchenne muscular dystrophy 9,132 10.5
Sickle Cell Anemia 13,049 15.0
Cystic Fibrosis 9,681 11.1
Chronic Granulomatous Disease 373 0.4
Appendicitis 57,542 66.2
Lyme Disease 18,804 21.6
Juvenile Idiopathic Arthritis 21,323 24.5
Immune Thrombocytopenic Purpura 3,539 4.1
Bronchopulmonary dysplasia of newborn 22,336 25.7
Brain tumor 23,493 27.0
Leukemia + Lymphoma 33,190 38.2

Current Population

The PEDSnet data resource comprises millions of children with clinical data. The data resource comprises patients known to a member institution having met ALL THREE  of the following criteria

  • Demographic data are available;
  • The person has one encounter with the member health system after January 1, 2009 which included a visit with a clinician; and
  • One or more coded diagnoses were recorded in the person’s record after January 1, 2009.

The following table provides a summary of the current demographics of PEDSnet, the demographics of two proposed member institutions, and the demographics of PEDSnet with their addition, as of March 2023

Number of Unique Patients 13,090,778
Age at First Visit, yrs
Mean Age (SD) 6.8 (9.8)
Age Categories
0 33.1%
1-4 22.9%
5-11 28.3%
12-17 26.4%
18-24 11.3%
25+ 7.4%
Follow-up, median (IQR), yrs
All Patients 3.1 [0.3-8.0]
Chronically Ill Patients 5.9 [2.1-10.8]
Sex (% of patients)
Female 50.0%
Male 49.9%
Race (% of patients)
Black/African American 15.5%
White 53.5%
Asian/Native Hawaiian/Other Pacific Islander 5.0%
American Indian or Alaska Native 0.4%
Multiple Race 2.7%
Other/Unknown 23.0%
Hispanic (% of patients)
Yes 19.1%
No 67.0%
Other/Unknown 23.0%
Private/commercial 46.1%
Public (Medicaid/SCHIP/Medicare) 30.9%
Other 23.1%
Medical Complexity (PMCA)
Complex Chronic (malignant, progressive, or 2+ body systems) 14.2%
Noncomplex Chronic 21.1%
Select Health Conditions
ADHD, age 4y and older 4.7%
Autism, age 2y and older 1.7%
Asthma, age 3y and older 7.9%
Cancer 0.5%
Type 1 & 2 Diabetes 1.0%
Neurodevelopmental Disorder, all ages 8.7%
Otitis Media 18.2%
Seizure Disorder/Epilepsy 3.6%

Each institution extracts required data from its EHR and transforms it to a Common Data Model (CDM).

Common Data Model

Last updated: 08/15/23