Developing a community-based genetic database to support breast cancer research: Successes, challenges, and lessons learned

Researchers continue to search for novel methods to prevent, detect, and treat breast cancer, which affects at least 1 in 8 women in the US. It is increasingly clear that a woman's genetic profile interacts with her environmental exposures to affect her risk of developing disease. The Spit for the Cure project in Arkansas seeks to establish a well-characterized cohort of women with and without breast cancer, collecting both survey data and genetic material (saliva samples). This archive will be used to support breast cancer research. To date, more than 8000 women have been recruited. Demographics of the cohort closely match the demographics of the state of Arkansas, though our cohort is better educated and older on average than the state's female population overall. One in four participants also have a relative in the cohort and 21% report a family history of breast cancer. Eleven percent are breast cancer survivors and more than 95% have given permission to be recontacted for future studies. The presentation will describe recruitment and retention strategies being used to develop and maintain the cohort and lessons learned over the past 2 years.