New Cedars-Sinai registry aims to link women with researchers
Historically, women have been under-represented in clinical trials. As a result, research findings have not always taken into account factors — including genetics, hormones, body size and physiology — in which women and men differ.
This discrepancy spurred clinicians at Cedars-Sinai Medical Center to create Research For Her, an online registry designed to increase the number of women participating in clinical trials and other research studies.
“Women have an opportunity to change the way medicine is delivered to them,” said Dr. BJ Rimel, a gynecologic oncologist in the Women’s Cancer Program at Cedars-Sinai’s Samuel Oschin Comprehensive Cancer Institute, as well as co-founder of the registry. “Making that process as easy as possible and providing women with a safe and comfortable and highly informed way to participate benefits all women.”
The Research For Her registry (cedars-sinai.edu/researchforher) was created by the Women’s Cancer Program at the Samuel Oschin Comprehensive Cancer Institute at Cedars-Sinai and is open to women 18 and older. To join, participants fill out an online questionnaire that asks about their medical history and health-related behaviors such as diet, alcohol consumption and smoking.
The registry’s organizers hope to enlist 2,000 participants. Using the resulting pool of data, their goal is to identify cancer risk factors and patients at higher risk for developing cancer. The registry also will help researchers to find women who fit the criteria for a particular study or clinical trial.
Though Research for Her started in 2010, it has recruited more than 350 women since transitioning to an online format last year, Rimel said. The total pool stands at about 500 women, 62 of whom have gone on to enroll in research studies taking place at the medical center.
While registry data will be available to departments throughout the hospital, it has so far predominantly connected participants to studies relating to women’s cancer. One study aims to determine whether a certain drug can prolong survival rates for women who have successfully been treated for ovarian cancer.
Other studies focus on aspects relating to BRCA1 and BRCA2 gene mutations, such as whether they have an effect on cardiac function. Ashkenazi Jews have a higher prevalence of these hereditary mutations, which are associated with advanced risk of breast and ovarian cancers. A Sept. 13 symposium at the Sofitel Los Angeles at Beverly Hills will explore advances in screening, prevention and treatment of hereditary cancers.
Rimel urges women to join the registry.
“This is how we get new treatments. This is how we find new screening mechanisms for our loved ones. It’s really important.”