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Voices: ‘Research for her’ registry seeks increased female representation

clinical researchClinical Trialsgynecologic cancer
May 17, 2013

‘Research for her’ registry seeks increased female representation | B.J. Rimel, MD

Historically, relatively few women have participated in clinical research, and as a result, the medical science community has often ignored biological differences between men and women. In an effort to close this gap and study the risks associated with female cancers, the Cedars-Sinai Samuel Oschin Comprehensive Cancer Institute, the S. Mark Taper Foundation Imaging Center and the Cardio-Oncology Program have opened an online registry, research for her, to increase the number of women participating in cancer research studies. As the co-principal investigator of the research for her registry in the Department of Obstetrics and Gynecology at Cedars-Sinai, I am hopeful that we can improve women’s involvement in clinical trials.

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The overall goal of research for her is to register at least 2,000 women with or without a history of breast or gynecologic cancers. The registry will help investigators identify cancer risk factors and those female patients who may be at higher risk for the disease. It will also help link interested individuals with important research studies, including large-scale epidemiological studies, cancer screening studies, focus groups and clinical therapeutic trials.

Each year, more than 180,000 in the U.S. will be diagnosed with breast cancer and more than 80,000 women will be diagnosed with gynecologic cancer, including cervical, ovarian, uterine, vaginal and vulvar cancer. Although these cancers are often grouped together, they vary widely in causes, risk factors, detection, treatment and survivorship statistics.

What we try to tell women, especially women who do not have cancer or a family history of it, is that they can help make a difference in the fight against women’s cancers in a noninvasive, very simple way. We try to tell them how much of a benefit they are to others. That’s our strongest weapon in this fight.

In the short term, this collaborative effort has translated into increased enrollment in the Gilda Radner Hereditary Cancer Program, an epidemiological study focused on women and men with a family history of cancer. Women and men who have been tested for the BRCA mutation are eligible to participate in the program.  Our current mechanism is only for those who live in or are willing to travel to Southern California, but if we can show it works on a small scale, then we can hopefully move on to something much bigger.

Potential research for her participants can visit cedars-sinai.edu/researchforher  to learn more about the program and to sign up. Women can join the initiative by consenting and answering a short questionnaire via smartphone, iPad or laptop, and all participant documents are confidential. By increasing the number of women who participate in clinical trials, it is our hope that women who are diagnosed with gynecologic cancers will have more answers than questions, and ultimately, even better treatment and outcomes for these malignancies.