Dr. Susan Love Research Foundation | Breast Cancer

Research Studies and Clinical Trials
Cancer researchers are currently studying the best methods to reduce breast cancer risk in high-risk women. If you are high risk, you may want to consider taking part in a clinical trial. Without clinical trials there would be no way to determine if new treatments or procedures are safe and effective in reducing breast cancer risk, what risks or side effects they have, and whether they are equivalent to or superior than treatments already in use.

Because new trials are getting underway all the time, primary care physicians are not always aware of all the trials open to their high-risk patients. This means that women who are high risk frequently must do their own research to find the research studies that may be right for them.

If you find a research study that interests you, contact the study coordinator. The coordinator will work with you to determine if you are eligible for the trial. You should also talk to your doctor about the study you are interested in. If your doctor does not think the trial is right for you, find out why. You can discuss your doctor's concerns with the study coordinator. You should also talk to the study coordinator about what the trial will cover and what may be required of your health insurance company.

There is no one central database for all breast cancer studies and clinical trials looking to enroll high-risk women. The following websites provide the most comprehensive listings.

CenterWatch
Click on "Trial Listings." Next, click on "Healthy Patient Studies." Then, look under your state for "Breast Health Outcomes in Women at High Risk for Breast Cancer."
Clinical Trials.gov
This clinical trials database, run by the US National Cancer Institute, includes more than 2,000 clinical trials. In the search field type "high risk breast cancer." Or call: 1-800-4-CANCER.

What Did the Study Find? Access to Clinical Trials Data Increases
In September 2004, the International Committee of Medical Journal Editors (ICMJE)—a group of editors who hail from what are widely considered the most important medical journals—simultaneously published editorials calling for the development of a comprehensive clinical trials registration database. Further, the editors announced that "all 11 ICMJE member journals will adopt a trials-registration policy to promote this goal."

Under this new policy, for a paper to be considered for publication in these journals, the trial it describes must have been registered previously in a public trials registry. Free access to the findings of all clinical trials—not just the ones that have been published—will provide women with a more comprehensive understanding of what the treatments they are taking can do, how they compare to other similar treatments, and what their full range of risks and side effects are.

Susan says:
I've been an advocate of the need for a mandatory clinical trials database for some time. I strongly feel that it is important for all publicly funded research results to be available to the public. Research should be a partnership between scientists and the participants and the data should be available to both.