Research is the best way for the medical community to discover better methods to detect, prevent, or treat diseases such as cancer, or to improve quality of life. These discoveries are made through careful study of different medical options to determine benefits, limitations, and risks compared with current standard care. Participating in research allows people to contribute to medical knowledge and offers the opportunity to receive cutting-edge care. Participation in research is not without risk; and, in order to receive funding, researchers must follow stringent guidelines to assure all participants are aware of the risks and their rights prior to participating in research. The guidelines require "informed consent," which explains the following to potential participants:
Researchers conduct clinical trials to test a new drug for treatment, relief of symptoms, or for prevention of disease. The process involves a systematic series of steps to assure the drug is safe and effective. These steps usually involve three “phases” of testing:
Search through ClinicalTrials.gov
This site, produced by the U.S. National Library of Medicine (NLM), provides
patients, family members, and members of the public easy and free access to
information on clinical studies for a wide range of diseases and conditions.
Prevention and Surveillance Studies
PARP Inhibitor Studies or Hereditary Cancer-Specific Treatment Studies
PARP Inhibitors are medications that may specifically target BRCA-associated cancers. Phase I and Phase II PARP Inhibitor studies are now enrolling patients at sites throughout the US and Europe. Below are links to information on PARP Inhibitor studies.
You can also call the following contacts at the institutions below regarding PARP Inhibitor clinical trials for breast cancer:
Other detection or prevention studies
The following sections of the FORCE website list research studies which may not be not listed on ClinicalTrials.gov:
The following programs which are specific to hereditary breast and ovarian cancer list studies through their facilities:
A cancer registry is a list designed to collect information about the occurrence of cancer such as:
The information generally is stored without any personal identification, protecting the confidentiality of participants. This data is used to enable researchers, public health professionals, and policy-makers to better understand and address the needs for cancer patients.
Registry data are critical for targeting programs focused on cancer risk including genetic, behavioral, and environmental risk factors. Such information is also essential for establishing and monitoring effective cancer screening and treatment. In addition, reliable registry data about patients is critical to research efforts, including research programs aimed at evaluating the effectiveness of cancer prevention, control, or treatment programs.
For hereditary cancers registries also play a very important role in determining
Registries are a way for researchers to contact those in the high-risk community with updates about research or information about new studies and programs concerned specifically with hereditary cancer. Because populations of individuals with known hereditary mutations are rare, a registry can be a way to link those people with the research and resources they need to manage their risk.
Family Cancer Genetics Network Registry
A national registry for families affected by hereditary cancers. The website
includes a form through which you can enroll in the registry online.
Cooperative Family
Registry for Breast and Ovarian Cancer
An ongoing project that gathers information about families with a history of
breast and/or ovarian cancer who volunteer to participate in this effort. This
data is made available to qualified researchers without any accompanying information
that can be used to personally identify the individuals or families involved.
Gilda Radner Familial
Ovarian Cancer Registry
A registry for families affected by hereditary ovarian cancer.
ClinicalTrials.gov
The website for research sponsored by the National Institute of Health
Clinical trials page from the National Coalition of Cancer Survivorship
Excellent overview of the types of clinical trials, patient protections and tips for finding relevant clinical trials.
National Cancer Institute (NCI)
Provides a comprehensive page on cancer clinical trials, including a publication on participating in clinical trials for cancer prevention.