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%)|
|Multiple Race||135,453(3%)||72,865 (10%)|
|Not Hispanic or Latino||3,934,598(86%)||1,870,371 (87%)|
|Hispanic or Latino||556,193(12%)||257,545 (12%)|
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.
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|
|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|
|Chronic Granulomatous Disease||61||0.1|
|Juvenile Idiopathic Arthritis||13,729||21.3|
|Immune Thrombocytopenic Purpura||5,080||7.9|
|Bronchopulmonary dysplasia of newborn||4,156||6.5|
|Leukemia + Lymphoma||16,430||25.5|
191 data elements across 15 data domains
|Unique Diagnoses (SNOMED-CT)||37,709|
|Unique Laboratory Test Results||404|
|Physiologic Measurements (Vitals, PFTs)||26|
|Unique Medications (unique ingredients + preparations)||18,757|