Data

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Comprehensiveness

191 data elements across 15 data domains

Summary Count
Unique Diagnoses (SNOMED-CT) 40,595
Unique Laboratory Test Results 6,090
Physiologic Measurements (Vitals, PFTs) 25
Unique Medications (unique ingredients + preparations) 20,314
Unique Procedures 33,441
Outpatient/ED Visits 60,470,435
Inpatient Admissions 2,506,257
Payer Plans 1,855


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 68,044 125.1
Asthma 327,252 601.5
Type 1 Diabetes 32,178 59.1
Inflammatory bowel disease (Ulcerative Colitis + Crohn's Disease) 12,251 22.5
Duchenne muscular dystrophy 782 1.4
Sickle Cell Anemia 5,689 10.5
Cystic Fibrosis 4,358 8.0
Chronic Granulomatous Disease 83 0.2
Appendicitis 31,829 58.5
Lyme Disease 13,538 24.9
Juvenile Idiopathic Arthritis 9,931 18.3
Immune Thrombocytopenic Purpura 3,584 6.6
Bronchopulmonary dysplasia of newborn 7,520 13.8
Brain tumor 9,481 17.4
Leukemia + Lymphoma 9,862 18.1


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.
Full Population N (%) Children Seen Recently N (%)
Total in Database 7,240,314 3,088,671
Current Age (in years)
0 33% 43%
1-4 25% 25%
5-11 25% 21%
12-17 15% 9%
18-24 1% 1%
25+ 1% 1%
Gender
Female 48% 49%
Male 52% 51%
Race
White 57% 56%
Black/African-American 14% 16%
Asian 5% 5%
Multiple Race 3% 4%
Other 10% 10%
Unknown 11% 9%
Ethnicity
Not Hispanic or Latino 75% 78%
Hispanic or Latino 15% 16%
Other 2% 1%
Unknown 8% 5%

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

Common Data Model

Last updated: 03/25/21