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

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Pervasive health disparities affecting U.S. Black women are now widely recognized, but large gaps in knowledge remain. We began the Black Women’s Health Study (BWHS) in 1995 to identify reasons for disparities, including cancer health disparities; at that time Black women represented a very small proportion of participants in observational cohort studies. We enrolled 59,000 participants over an 8-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 on paper 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 neighborhood-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; COVID-19 infection; 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, such as COVID-19, that disproportionately affect Black women. (According to the National Death Index (NDI), over 100 BWHS participants died from COVID-19 infection in 2020.) To reduce costs, we will reduce the frequency of questionnaires while still linking to NDI, Medicare, and cancer registries to identify and confirm new cancers, other illnesses, and deaths. We will continue to share BWHS data and samples with outside investigators, and underrepresented minority investigators in particular, and will modernize our website and data sharing systems to increase accessibility. Continued follow-up of this landmark study is critical to inform opportunities for risk reduction in a vulnerable population and to close the gap in racial disparities in cancer and other illnesses.