Abstract
Background The establishment of large population-based biorepositories, linked to clinical and epidemiologic data, is essential for research designed to advance the field of personalized medicine. Health care delivery organizations, with electronic medical record data for large populations of patients, are in a unique position to enhance biorepository development.
Methods The Northwest Institute of Genetic Medicine [NWIGM] biorepository is a collaboration between the University of Washington [UW] and Group Health [GH] designed to build and pilot new infrastructure to collect high-throughput genomic data to facilitate future clinical investigation. The short-term goal is recruit 2000 GH enrollees (50–65 years old) who completed an online Health Risk Assessment [HRA]. The rationale for sampling HRA completers guarantees systematically collected demographic and medical history data will be available for future analyses. Potentially eligible enrollees are mailed an invitation and asked to indicate their interest by calling or mailing back the enclosed reply form (a second mailing is sent to non-responders). GH Research Institute staff contact interested enrollees by phone to assess interest and eligibility; those who agree are mailed a blood draw kit to take to a GH lab and consent form to mail back to the Research Institute. Participants receive a $50 incentive. The consent form describes that DNA will be extracted from the blood sample and stored indefinitely, and will be used with data from participants’ medical records (including HRA data) for the purpose of future genetic research, and designed to cover a broad range of possible future analyses.
Results Developmental work began in September 2008--including protocol and consent development, and “gate-keeping” procedures for future researchers to access biorepository data. Data collection began in November 2009 after a longer than expected contract negotiation process between UW and GH, specifically data sharing and control issues. To date, 1246 of 3,100 invited enrollees (40%) have agreed to participation by phone and 1120 have enrolled.
Conclusions Enrollment in the NWIGM biorepository has been higher than expected from this sample of 50–65 year old HRA completers. Researchers will meet the short-term recruitment goal, demonstrating efficient infrastructure is in place to continue building this population-based biorepository.
