Table 1.
Institution | Biorepository Overview | Recruitment Model | Repository Size (Race/Ethnicity) | EMR Summary | Primary Phenotype | Phenotyping Methods* |
---|---|---|---|---|---|---|
Group Health (Seattle, WA) |
GHC Biobank Alzheimer’s Disease Patient Registry and Adult Changes in Thought Study |
Disease specific Cohort | 4,000 (>96% Caucasian) | Comprehensive Vendor- based EMR since 2004 20+ years pharmacy data 15+ years ICD9 data |
Dementia | Structured data extraction, Free-text searches, Manual chart review |
Marshfield Clinic Research Foundation (Marshfield, WI) |
Personalized Medicine Research Project. Geographically defined cohort within an integrated regional health care system |
Population based | 20,000 (98% Caucasian) | Comprehensive internally developed EMR since 1985 75% participants have 20+ years medical history |
Cataracts | Structured data extraction, NLP, Intelligent Character Recognition |
Mayo Clinic (Rochester, MN) |
Vascular Diseases Biorepository.
Mayo Clinic Non-Invasive Vascular Laboratory & Exercise Stress Testing Lab |
Disease specific cohort | 3,500 (>96% Caucasian) | Comprehensive Internally developed EMR since 1995. 40 years history of data extraction |
Peripheral Arterial Disease (PAD) | Structured data extraction, NLP |
Northwestern University (Chicago, IL) |
Nugene Project.
Northwestern affiliated hospitals and outpatient clinics |
Population based | 10,000 (12% AA 8% Hispanic) | Comprehensive Vendor based inpatient (2001) and outpatient (1999)) EMRs 20+ years ICD9 data |
Type 2 diabetes | Structured data extraction, Free-text searches |
Vanderbilt University (Nashville, TN) |
BioVU:
Vanderbilt Clinic, diverse outpatient population |
Population based, Opt- out consent model | 92,000 (11% AA) | Comprehensive internally developed EMR since 2000 35+ years medical history data |
Cardiac conduction | Structured data extraction, NLP |
NLP, Natural Language Processing; Structured data extraction refers to retrieving EMR data that has been stored in a predefined format