MACGN 2000:

Status Report

Progress and change has marked the year 2000. Along with leadership transition as Constance Griffin, Ph.D. assumed the role of primary investigator, MACGN added to its core staff a database programmer (Kelly Qu), a project coordinator for breast and ovarian cancer studies (Tara Friebel, MPH), and a new health educator (Philana Chen, MPH). Here is an update on some of the other events on the local and national levels:

Pilot Projects in Development

At the national level, the Cancer Genetics Network (CGN) is actively forming clinical studies.

New Screening Regimen for Women at Increased Risk of Breast and Ovarian Cancer - Steven Skates, Ph.D., at Massachusetts General Hospital, is leading a CGN investigation on predicting ovarian cancer development in high-risk women by measuring changes in blood levels of CA125, a tumor marker. Earlier screening trials using this technique in women with average risk have been promising. Women with a BRCA 1 or 2 mutation have an increased lifetime risk for ovarian cancer, 10-20 fold higher than women without BRCA 1 or 2 mutations. Therefore, information on the efficacy and feasibility of this technique is doubly important for this population. A similar trial is being proposed in the UK, and will allow a pooled analysis at the end of the trials. This project has recently been approved by NCI.

Treatment of Hot Flashes in Women at Increased Risk of Breast Cancer - Kala Visvanathan, Ph.D. and Kathy Helzlsouer, Ph.D., at Johns Hopkins University, will study if Venlafaxine Hydrochloride is more effective than Clonidine Hydrochloride in reducing the frequency, severity, and duration of hot flashes (3-5 minute episodes of flushing, sweating) in women at an increased risk of breast cancer. Treatment of hot flashes is important when they interfere with daily activities. However, estrogen therapy in women at high risk for breast cancer is controversial because it has been linked to an increased risk of breast cancer with extended use.

Fruitful Relationships with High-Risk Clinics

MACGN has had very productive relationships with the Breast and Ovarian Surveillance Service and the Colorectal Cancer Risk Assessment programs at the Johns Hopkins Hospital. Through collaborative arrangements, MACGN has been able to recruit high-risk individuals and families into the registry for possible participation in future studies. The high-risk clinics have benefited from the stronger database support that the MACGN is able to provide, allowing automation and standardization of valuable data that will support research. The families have gained access to information about the most current and accurate information on hereditary cancer and risk management.

Education and Marketing

A subcommittee dedicated to production and standardized review of education and marketing materials was recently established. Several fact sheets were developed for patients and providers on hereditary breast cancer, hereditary prostate cancer, familial pancreatic cancer, genetic counseling, and genetic testing. Also in development is a professional packet to educate health care providers about hereditary cancer susceptibility, guide them in assessing the need to refer their patients to genetic counselors, and provide them with informational resources. Lastly, MACGN is finalizing a Peutz-Jeghers Syndrome booklet, currently under evaluation by patients.