Patients and their families often need help learning about the purpose of clinical trials and how to find and evaluate studies that are enrolling participants. Your patient group can help identify patients who may be eligible to participate in clinical trials.
Members of your patient group can help review and monitor clinical trials by serving on Institutional Review Boards (IRBs) and Data Safety and Monitoring Boards (DSMBs). IRBs approve, monitor, and review biomedical and behavioral research involving humans to assure that appropriate steps are taken to protect the rights and welfare of human participants. DSMBs are independent groups of experts who monitor patient safety and treatment efficacy during clinical trials.
You can take part in FDA Advisory Committee meetings because they are open to the public. You can submit oral or written testimony or attend the meeting as an audience member. Your comments may include advising the FDA about benefits or risks of an investigational therapy or discussing the impact of living with your disease.