CORE--MAINTENANCE

Columbia University Health Sciences, New York NY

Investigators

Linked publications & trials

Abstract

The Metropolitan New York Registry, one of six collaborating CFRBCS sites, has contributed to all aspects of the development of the unique resource for genetic epidemiology research. Between January 1997 and January 2000 our clinic based registry has recruited 1102 families with a total of 3,252 participants and recruitment is ongoing. The biospecimens repository, pedigree and epidemiologic data have been used by CFRBCS colleagues and external investigators to address major breast cancer research questions. Additional funding was received for the Ashkenazim component of the NY Registry with support for BRCA founder mutations testing and counseling; an options requested by approximately 20% of the 509 families of Ashkenazim heritage. During renewal one of the primary goals is to increase the ethnic diversity of the NY Registry by: recruiting 450 additional families. By targeted outreach with the assistance of community leaders and local Registry participants in several northern Manhattan and Queens health districts, we expect to recruit 200 additional Hispanic, 150 African American, and 100 Asian families during the first 3 years of our renewal reserving an additional year for recruiting relatives and completion of biospecimen and data collection. Renewal will also provide resources to increase the number of relatives participating per family, to complete collection of data and biospecimens, including tumor tissue blocks, of current participants blocks, of current participants; to conduct comprehensive follow-up 5 years after enrollment, obtain current cancer status for all relatives in the family pedigree; continue biannual mailings of newsletters and invitation to educational, and community-based seminars. Additional essential goals include maintenance of the biospecimens repository and the processing and banking of all additional biospecimens; specimens must also be prepared for shipping to approved investigators. The Computer Coordinating Core of the NY Registry must be enhanced to accommodate the additional datafiles proposed from the research modules; the integrity of the database must be maintained to insure the availability of the files for research while protecting the confidentiality of the personal information. Data from all questionnaires must be computerized and all files prepared for transmission to the CFRBCS Informatics Center. These activities are essential to maintain the viability of the NY Registry and to ensure the families, who willingly joined the Registry to further research,, will be contributing to ongoing interdisciplinary studies that may further our understanding of genetic and environmental causes of breast cancer and lead to avenues for prevention. Renewal will provide additional resources and maintain those already banked by our collaborative CFRBCS team for multi-disciplinary breast cancer research.