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

影响美国黑人女性的普遍健康差距现在得到了广泛承认，但在 知识留了下来。我们在1995年开始了黑人妇女健康研究(BWHS)，以确定原因 差异，包括癌症健康差异；当时黑人妇女只占很小的比例 观察性队列研究的参与者。1995年，我们在8个月的时间里招募了59,000名参与者 通过一份冗长的邮寄问卷。随后，参与者被要求完成后续调查问卷， 通常是四页，每两年一次，无论是纸质的还是在线的。在最近的调查问卷周期中， 这两种方法的回答各占一半。超过51,000名参与者仍然活着，并做出了回应 利率继续保持良好。在收到2019/20年度调查问卷的约48,000人中，71% 完成了调查，79%的人回答了那份问卷或前一份问卷。唾液样本作为 已为27,800名参与者获取和存储了生殖系和微生物DNA，并为 13,030名参与者。已为1000多例乳腺癌病例采集了乳腺肿瘤样本； 组织收集是在最近的资助期间开始的，用于治疗其他四种癌症。BWHS研究涵盖 从个人行为、用药和其他特征，到心理社会因素， 遗传因素和邻里层面的因素。同行评议的出版物讨论了一系列健康问题 癌症：包括乳腺癌、肺癌、卵巢癌、结直肠癌、子宫内膜癌、胰腺癌、肝癌和多发性 骨髓瘤；2型糖尿病；肥胖；狼疮；结节病；早产；不孕症；子宫肌瘤；认知 衰弱；睡眠障碍；高血压；新冠肺炎感染；和死亡率。超过一半的当前参与者 未成年的，为癌症病因学的进一步研究提供了潜力，包括收集 新的或重复的暴露和协变量。在下一个资金期，我们预计将产生 关于多发性骨髓瘤和结直肠癌、肺癌和胰腺癌风险的研究结果；乳腺癌和 结直肠癌存活率；认知功能减退和阿尔茨海默病；终末期肾病；以及其他 像新冠肺炎这样的疾病，对黑人女性的影响不成比例。(据《国家死亡》报道) (根据国家发展指数，2020年有100多名BWHS参与者死于新冠肺炎感染。)为了降低成本，我们将 减少调查问卷的频率，同时仍与NDI、Medicare和癌症登记机构链接，以识别和 确认新的癌症、其他疾病和死亡。我们将继续与BWHS分享数据和样本 外部调查人员，特别是代表性不足的少数族裔调查人员，并将使我们的网站现代化 和数据共享系统，以提高可访问性。这项具有里程碑意义的研究的持续后续行动对 为弱势群体提供减少风险的机会，缩小#年种族差距的差距 癌症和其他疾病。

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.