Table 1.
Summary of biorepositories and electronic medical records (EMRs) at 10 eMERGE-Institutions. Adapted from Gottesman et al. (2013).
Institution | Biorepository | Recruitment model | Biorepository size | Race/ethnicity and age of donors |
---|---|---|---|---|
Boston Children’s Hospital | Gene Partnership | Outpatient and hospital-based | 3,372 | 83% European 9% African 6% Asian 11% Hispanic/Latino Mean age: 23 years |
Children’s Hospital of Philadelphia | A Study of the Genetic Causes of Complex Pediatric Disorders | Population-based and disease-specific | 60,000 internal (plus 100,000 external) | 47.0% European 43.3% African 7.0% Admixed 1.7% Asian 0.8% Hispanic 0.2% Native Amer. Mean age: 11 years |
Cincinnati Children’s Hospital | Better Outcomes for Children | Outpatient and hospital-based | 8,472 | 73% European 10% African Mean age: 9 years |
Geisinger Clinic | MyCode® | Population-based and disease-specific | 35,000 | 98% European Age: < 89 years |
Group Health Seattle | ACT Study; Alzheimer’s Disease Patient Registry (ADPR); Northwest Institute of Genetic Medicine (NWIGM) | Disease-specific and HMO-based | 5,859 | 92% European Age: > 50 years |
Marshfield Clinic Research Foundation | Personalized Medicine Research Project | Population-based | 20,000 | 98% European Mean age: 48 years |
Mayo Clinic | Vascular disease biorepository (VDB); Mayo Clinic Biobank; other disease-specific | Outpatient-based | 36,000 | 97% European Mean age: 63 years |
Mount Sinai School of Medicine | BioMeTM, The Charles Bronfman Institute for Personalized Medicine Biobank Program | Outpatient and hospital-based | 25,000 | 40% Hispanic/Latino 25% African 25% European |
Northwestern University | NUgene | Outpatient and hospital-based | 12,000 | 9% Hispanic/Latino 12% African 78% European Mean age: 48 years |
Vanderbilt University | BioVU | Outpatient and hospital-based | 155,000 | 2% Hispanic/Latino 15% African 80% European Mean age: 49 years |