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Comprehensiveness
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.
| Characteristic | Overall, N = 8,692,2051 | Recent, N = 3,239,9691 |
|---|---|---|
| 1 n (%) | ||
Each institution extracts required data from its EHR and transforms it to a Common Data Model (CDM).
Common Data ModelLast updated: 01/12/22