Everything we know and will learn in the future about hereditary cancer risks, screening, and treatment comes from years of scientific research and the direct participation of thousands of volunteers.
Finding and enrolling in research studies gives us the ability to directly improve healthcare and to help scientists discover better ways to prevent and detect cancer, extend survival, and improve quality of life for ourselves and future generations.
Hereditary cancers are different from “sporadic” cancers, requiring different screening, prevention, and treatment methods and different approaches to research. Many research studies are open and need patient participation. But hereditary cancer patients make up a small subset of all cancer patients, and hereditary cancer research studies are a small part of all cancer research.
For every study looking specifically at hereditary breast and ovarian cancers (HBOC), hundreds of other studies exist that are open to any and all cancer patients. These less specific studies draw from the pool of hereditary cancer patients, leaving fewer possible participants for studies that are designed for people with hereditary cancer. More general advanced ovarian cancer clinical trials draw from women with and without BRCA
mutations. This leaves fewer BRCA
mutation carriers available to participate and complete studies that are specifically designed for mutation carriers. This predicament is also true for breast and other hereditary cancers and cancer-causing mutations.
Understanding how to find studies and volunteer for research participation is equally challenging. FORCE is committed to making research enrollment as easy as possible for our community. We have developed a research and clinical trial search tool that helps to match people facing hereditary cancer with research studies that are specifically designed to understand hereditary cancer. The database, which is updated regularly, includes studies on breast, ovarian, fallopian tube, prostate, melanoma, and pancreatic cancers. Studies can be searched by region, cancer site, phase of research, and trial type (prevention, detection, treatment, and quality of life).
To access the HBOC Research Search Tool and for more information, go to facingourrisk.org/researchtool