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Cancer Control Research

Abstract

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.