A Follow-up Study for Causes of Cancer in Black Women

High rates of chronic diseases, including many types of cancer, in U.S. Black women are widely recognized, but large gaps in knowledge remain. We began the Black Women’s Health Study (BWHS) in 1995 to identify reasons for this excess in chronic disease. At that time Black women represented a very small proportion of participants in observational cohort studies. We enrolled 59,000 participants over an eight-month period in 1995 via a lengthy mail questionnaire. Subsequently, participants were asked to complete follow-up questionnaires, usually four pages in length, every two years, either by mail or online. In the most recent questionnaire cycle, responses were split equally between the two methods. Over 51,000 participants are still alive and response rates continue to be good. Among approximately 48,000 who were sent a 2019/20 questionnaire, 71% completed it and 79% responded to either that questionnaire or the prior one. Saliva samples as a source of germline and microbial DNA have been obtained and stored for 27,800 participants and blood samples for 13,030 participants. Breast tumor samples have been obtained for over 1,000 breast cancer cases; tumor tissue collection was begun in the most recent funding period for four other cancers. BWHS research covers the spectrum from individual behaviors, medication use, and other characteristics, to psychosocial factors, genetic factors, and area-level factors. Peer-reviewed publications have addressed a range of health conditions: cancers that include breast, lung, ovarian, colorectal, endometrial, pancreatic, liver, and multiple myeloma; type 2 diabetes; obesity; lupus; sarcoidosis; preterm birth; infertility; uterine leiomyoma; cognitive decline; sleep disorders; hypertension; and mortality. More than half of current participants are under age 64, affording the potential for additional research on cancer etiology, including with collection of new or repeated exposures and covariates. During the next funding period, we expect to produce impactful findings with regard to risk of multiple myeloma and colorectal, lung, and pancreatic cancer; breast and colorectal cancer survivorship; cognitive decline and Alzheimer’s disease; end-stage renal disease; and other conditions. To reduce costs, we will reduce the frequency of questionnaires while still linking to the National Death Index, Medicare, and cancer registries to identify and confirm new cancers, other illnesses, and deaths. We will continue to share BWHS data and samples with investigators from other institutions and will modernize our website and data sharing systems to increase accessibility. Continued follow- up in this landmark study is critical to inform opportunities for risk reduction in a high-risk population, and to provide findings relevant to all U.S. women.