Data Network Summary

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 December 31, 2008 which included a visit with a clinician; and
  • One or more coded diagnoses were recorded in the person’s record after December 31, 2008.

The table below provides demographic information about all patients in our database as well as those who have been seen recently (within the past 18 months). 

Full Population N (%) Children Seen Recently N (%)
Total in Database 5,301,562 2,279,235
Current Age (in years)
0 58,141 (1%) 58,139 (3%)
1-4 859,065 (17%) 575,632 (25%)
5-11 1,868,187 (36%) 807,642 (35%)
12-17 1,285,196 (25%) 598,975 (26%)
18-24 893,721 (17%) 197,703 (9%)
25+ 171,746 (3%) 41,142 (2%)
Gender
Female 2,502,952(49%) 1,112,365 (49%)
Male 2,632,518(51%) 1,112,365 (49%)
Race
White 3,021,848(66%) 1,332,096 (64%)
Black 821,943(18%) 417,138 (20%)
Asian 149,204(3%) 66,294 (3%)
Multiple Race 135,453(3%) 72,865 (10%)
Other 464,295(10%) 190,586 (8%)
Ethnicity
Not Hispanic or Latino 3,934,598(86%) 1,870,371 (87%)
Hispanic or Latino 556,193(12%) 257,545 (12%)
Other 108,268(2%) 28,553 (1%)


Geographic Diversity

The greatest density of children seen in PEDSnet come from the regions around each member institution, together accounting for 12 sates. 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 99,984 155.5
Asthma 616,985 959.4
Type 1 Diabetes 12,100 18.8
Type 2 Diabetes 16,472 25.6
Inflammatory bowel disease (Ulcerative Colitis + Crohn's Disease) 15,772 24.5
Duchenne muscular dystrophy 313 0.5
Sickle Cell Anemia 9,714 15.1
Cystic Fibrosis 6,711 10.4
Chronic Granulomatous Disease 61 0.1
Appendicitis 29,428 45.8
Lyme Disease 14,127 22.0
Juvenile Idiopathic Arthritis 13,729 21.3
Immune Thrombocytopenic Purpura 5,080 7.9
Bronchopulmonary dysplasia of newborn 4,156 6.5
Brain tumor 13,107 20.4
Solid cancer 23,872 37.1
Leukemia + Lymphoma 16,430 25.5


Comprehensiveness

191 data elements across 15 data domains

Summary Count
Unique Patients 5,301,562
Unique Diagnoses (SNOMED-CT) 37,709
Unique Laboratory Test Results 404
Physiologic Measurements (Vitals, PFTs) 26
Unique Medications (unique ingredients + preparations) 18,757
Unique Procedures 13,884
Outpatient/ED Visits 137,880,964
Inpatient Admissions 2,685,164
Payer Plans 1990