Metropolitan New York Registry of Breast Cancer Families
Ruby T. Senie, Ph.D., M.S.
Columbia University, New York, NY
The Metropolitan New York Registry was established in 1995 to enroll families with history of breast or ovarian cancer who were willing to participate in research. Both men and women were invited to enroll, with recruitment focused in Long Island (Nassau and Suffolk counties), NY.
Families were eligible to enroll who met one or more of the following criteria: a male relative who had been treated for breast cancer, a female relative who had been treated for breast cancer before the age of 45, a female relative who had been treated for both breast and ovarian cancer, and/or who had two or more first- or second-degree female relatives treated for breast or ovarian cancer at age 45 or older. Participants were asked to contribute personal health information, blood, and urine samples. DNA from members of some families was analyzed to detect mutations (changes) in BRCA1 and BRCA2 genes that may be associated with risk of breast and ovarian cancer. All information was, and continues to be, kept confidential, and all data and specimens are stored separately from any identifying information.
The Metropolitan New York Registry was first directed by Ruby Senie, Ph.D., of Columbia University (pictured), and funded by the National Cancer Institute (NCI) as part of the Long Island Breast Cancer Study Project (LIBCSP). The Registry and five other NCI-funded Registry sites form the Breast Cancer Family Registry (B-CFR), which is a major resource of data and biospecimens from high-risk families that is used for many areas of breast and ovarian cancer research, including study of genes and the environment.
This readily available resource of data and biospecimens has helped accelerate research on the causes of breast and ovarian cancer, familial susceptibility, and the impact of environment and lifestyle on cancer development.
In 1999 after five years of funding as part of the LIBCSP, support for the Metropolitan New York Registry was continued as part of NCI's general grant program. Mary Beth Terry, Ph.D., of Columbia University, presently is the Director. Funding for the six B-CFR sites supports their maintenance as a resource for investigators, follow-up of all participants to collect additional information and biospecimens, and recruitment of additional members of enrolled families.
The Metropolitan New York Registry has enrolled more than 1,400 families including more than 4,800 women and men with a history of breast or ovarian cancer.
All B-CFR sites now are conducting a Follow-up Study of Registry families to collect additional information and biospecimens in order to expand the research resource.
New families are not being recruited, but additional members of families who already are enrolled are invited to join.
To learn more about the Metropolitan New York Registry or the Follow-up Study, call 212-304-6433 or toll free 1-888-METRO-08. The Registry also may be reached by e-mail at: firstname.lastname@example.org.