|Name of Biobank
||Kaiser Permanente Research Program on Genes, Environment, and Health (RPGEH)
|Primary objective (one sentence)
||Create a resource for epidemiologic research into the genetic and environmental factors in disease and health across diverse populations.
|Key components (please briefly address the following):
||Began enrolling adult participants in 2007; plan to enroll 500K participants by 2013.
|Sample size (current and anticipated) and characteristics (age, gender)
||Sample Size: Approximately 400K participants have completed a survey of demographic, behavioral and health history information; as of 1/15/10, approximately 129K of these participants have provided broad written consent and a saliva sample. Anticipated size of cohort (with completed health surveys and DNA samples) by 2013: 500K
Cohort recruited from adult members of Kaiser Permanente (KP) Health Plan in Northern California. Among cohort enrolled to date, ages range from 18 – 107 with average age of 65 years; 35% are male, 65% are female. Distribution of self-reported race-ethnicity is approximately 5% Asian, 2.5% Black, 6% Hispanic, 5.5% Multiple Race-ethnicity, 1% Other, 76% White and 4% Unknown.
|Recruitment area, method of recruitment/follow-up, sample representativeness
||Recruitment area: Northern California (18 counties; 3.2 million population base)
Method of recruitment: materials mailed to all adult Health Plan members (email recruitment expected to begin in 2010); pregnancy cohort initiated through prenatal group classes.
Follow-up: Regular mails, telephone, e-mail. Continuous follow-up of medical utilization, membership, location.
Sample representativeness: At completion, planned cohort will be representative of Health Plan membership and population of northern California. Initial enrolled sample is older, more white, more female, and better educated than the general population.
|Types of data/specimens collected (questionnaire, physical exam)
Data collected/available include:
- Surveys of demographic, behavioral, and health history information;
- Geographic Information System databases with information on environmental exposures, including air and water quality, pesticide application, built environment, and census data available to be linked to residences of participants;
- Comprehensive, continuously updated electronic medical records for clinical and administrative data;
- 129K saliva specimens collected to date for DNA extraction; blood sample collection (serum, plasma, buffy coats, and lymphocytes to be stored) beginning in 2010; 300 K blood samples planned.
|Data collection, storage, processing systems
||Research database including electronic medical records, survey results, genotypic data and other data are maintained in Oracle database on dedicated server. Selection of commercial laboratory information management system (LIMS) is imminent. Sample tracking coordinated with KP laboratory systems. Survey data collection uses web-based system and optically scanned mailed questionnaires.
|Method of consent, reporting of results
||Consent: broad (not study or disease specific) written consent for all participants
Reporting of results: participants will not be provided with genetic or other results, and results will not be shared with Health Plan or providers. If results are obtained that have important health implications for a participant, the IRB will be informed and participant will be contacted about the information.
|Health outcomes of interest
||Kaiser Permanente and grants from the Robert Wood Johnson Foundation, the Wayne and Gladys Valley Foundation, and the Ellison Medical Foundation