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

影响美国黑人妇女的普遍健康差距现在得到了广泛的承认，但 知识仍然存在。我们在1995年开始了黑人妇女健康研究（BWHS）， 差异，包括癌症健康差异;当时黑人妇女占很小的比例， 参与观察性队列研究。1995年，我们在8个月的时间里招募了59，000名参与者 通过一份冗长的邮件调查问卷。随后，参与者被要求完成后续调查问卷， 通常是四页长，每两年一次，无论是在纸上还是网上。在最近一轮调查中， 在两种方法之间平均分配响应。超过51，000名参与者仍然活着， 利率继续保持良好。在收到2019/20年度问卷的约48，000人中，71% 79%的人完成了调查问卷，79%的人回答了该问卷或前一份问卷。唾液样本作为 已经获得并储存了27，800名参与者的生殖细胞和微生物DNA，并采集了血液样本， 13，030名参与者。已为1 000多例乳腺癌病例采集了乳腺肿瘤样本;肿瘤 在最近的供资期间，已开始为其他四种癌症收集组织。BWHS研究涵盖 从个人行为、药物使用和其他特征，到心理社会因素， 遗传因素和邻里因素。同行评审的出版物讨论了一系列健康问题， 条件：癌症，包括乳腺癌，肺癌，卵巢癌，结肠直肠癌，子宫内膜癌，胰腺癌，肝癌，和多种 骨髓瘤; 2型糖尿病;肥胖;狼疮;结节病;早产;不孕症;子宫平滑肌瘤;认知 下降;睡眠障碍;高血压; COVID-19感染;和死亡率。超过一半的现有参与者 年龄在64岁以下，为进一步研究癌症病因提供了可能，包括收集 新的或重复的暴露和协变量。在下一个融资期间，我们希望产生有影响力的 关于多发性骨髓瘤、结直肠癌、肺癌和胰腺癌风险的发现;乳腺癌和 结直肠癌生存率;认知能力下降和阿尔茨海默病;终末期肾病;以及其他 条件，如COVID-19，不成比例地影响黑人妇女。（根据国家死亡 指数（NDI），超过100名BWHS参与者于二零二零年死于COVID-19感染。为了降低成本，我们将 减少问卷调查的频率，同时仍然与NDI，Medicare和癌症登记处联系，以确定和 确认新的癌症，其他疾病和死亡。我们将继续分享BWHS数据和样本， 外部调查人员，特别是代表性不足的少数民族调查人员，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。对这一具有里程碑意义的研究进行持续随访， 为弱势群体提供减少风险的机会，缩小种族差距方面的差距， 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.