Spring 2003

MACGN Studies and Enrollment Growing

Text Box: Constance Griffin, MD
Principle Investigator
Mid Atlantic Cancer Genetics Network The National Cancer Institute’s goals were for the creation of a registry of individuals and families with cancer, who could be contacted for scientific studies regarding the genetics of cancer. As of fall 2002, there are about 13,000 families in the CGN with one family member with cancer, 500 families with two members with cancer, and 600 families with three. A number of CGN participants do not have cancer, but have an affected family member. This collection of individuals is now being used for scientific studies, several of which are described below. As the CGN moves into the future, we are looking at ways to increase the diversity of individuals who are registry participants, because it is important that the CGN registry reflect the population of the US.

Several of the earliest CGN studies are nearing completion. The first is a comparison of existing models to predict the chance that an individual carries a BRCA gene mutation; this study has been headed by Dr Giovanni Parmigianni at Johns Hopkins University. The second is evaluation of the effect of offering an inexpensive phone card on enrollment in the CGN. A third was collection of blood from individuals with prostate cancer to identify additional genes which predispose to prostate cancer. To date, blood samples have been collected from 399 individuals and 148 relatives have been enrolled, and assessment of the status of a number of genes in these families will begin soon. Well underway is a study to determine the utility of monitoring CA125 blood levels four times per year in women who are at increased risk for ovarian cancer. The goal is to enroll 2400 high-risk women, and the sites from the Specialized Program of Research Excellence (SPORE) and the Gynecologic Oncology Group have joined with CGN in this venture. Just beginning is a study to identify new genes which predispose to colon cancer and another study evaluating magnetic resonance imaging (MRI) as a screening method for breast cancer in high risk women.

The CGN is a program within the NCI’s Epidemiology and Genetics Research Program which gained new leadership with the appointment of Dr. Edward Trapido in October 2002. The goals of the CGN in 2003 are to increase minority enrollment, to complete ongoing studies, and to encourage studies from investigators who are not located at one of the eight CGN sites. It is an exciting time in the development of the CGN, and we look forward to your continued involvement in the New Year.