Choice to Join a Cancer Registry: Racial Differences

描述（由申请人提供）：癌症登记是癌症的环境或生活方式风险因素的流行病学研究的重要资源，以及最近的遗传易感性研究。与州或联邦登记处不同，为支持研究而创建的登记处的参与是自愿的。非裔美国人在乳腺癌研究中的代表性不足，可能在自愿癌症登记中也是如此。只有少数研究调查了影响非裔美国人和白种人登记意愿的因素差异，或者为基因分型提供生物标本。大辛辛那提乳腺癌登记处于2004年5月11日开始招募活动，到目前为止，已有3021名有乳腺癌病史的人被招募。随着我们继续招募，我们建议对600名有乳腺癌病史但尚未注册的女性进行前瞻性队列研究，以检查影响注册意愿的因素，并提供生物标本进行基因分型。我们提出的研究的具体目的是：1)检查预测向乳腺癌登记处提供数据的意愿的因素或信念的相对强度，并为基因分型提供生物标本，以及这些因素或信念在白人和非裔美国妇女之间的差异；2)通过比较登记参与者与非登记参与者的病理、诊断方式和治疗特征等因素，评估未参加登记导致的信息丢失的类型和程度，并区分非裔美国女性与高加索女性的信息丢失。这项研究的结果将导致更有效的招募策略，用于自愿登记和获取生物标本进行基因分型。癌症登记是研究导致癌症的环境和生活方式因素的重要资源。这项研究考察了影响向乳腺癌登记处提供数据或提供血液或脸颊细胞样本进行基因分型的意愿的因素（年龄、种族、临床病史）和信仰。

DESCRIPTION (provided by applicant): Cancer registries are an important resource for epidemiology studies of environmental or lifestyle risk factors for cancer, and more recently, for studies of genetic susceptibility. Unlike state or federal registries, participation in registries created for support of research is voluntary. African-Americans are often under- represented in studies of breast cancer, and probably also in voluntary cancer registries. Only a few studies have examined the differences in factors that affect willingness to enroll in a registry among African- Americans and Caucasians, or to provide a bio-specimen for genotyping. The Breast Cancer Registry of Greater Cincinnati began recruitment activities on May 11, 2004, and to date, 3021 persons with a history of breast cancer are enrolled. As we continue with ongoing recruitment, we propose to conduct a prospective cohort study of 600 women with a history of breast cancer but not already enrolled in the Registry, to examine the factors affecting willingness to enroll and to provide a biospecimen for genotyping. The Specific Aims of our proposed study are: 1) To examine the relative strength of factors or beliefs that predict willingness to provide data to a breast cancer registry, and to provide a biospecimen for genotyping, and how those factors or beliefs differ between Caucasian and African-American women; 2) To assess type and degree of loss of information caused by registry non-participation, by comparing factors such as pathology, diagnostic modality and treatment characteristics of registry participants to non-participants, and to differentiate this loss in African-American women versus Caucasian women. The findings of this study will result in more effective recruitment strategies for voluntary registries and for obtaining biospecimens for genotyping. Cancer registries are an important resource for studies of environmental and lifestyle factors that cause cancer. This study examines the factors (age, race, clinical history) and beliefs that affect willingness to provide data to a breast cancer registry or to provide a blood or cheek cell sample for genotyping.