Clinical trials offer an opportunity for patients to participate in scientific and industry research. In a clinical trial, participants receive specific interventions according to the research plan or protocol created by the investigators. These interventions may be medical products, such as drugs or devices, procedures, or changes to participants’ behavior, such as diet.
National Institutes of Health PSC Trials
The National Institutes of Health (NIH) offers a web site of clinical trials specific to PSC. Visit ClinicalTrials.gov.
What should a patient consider before enrolling in a clinical study?
Christopher L. Bowlus, MD, University of California Davis, Co-Chair, PSC Partners Scientific/Medical Advisory Committee
Participating in clinical studies is critical to understanding PSC and to developing effective treatments. The opportunities for PSC patients to participate in studies has increased significantly in the last decade and hopefully will continue to increase as we make progress towards improving the lives of PSC patients. Although there are unique challenges to PSC given its rarity and the slow and variable progression of the disease, the general rules and ethics of conducting clinical studies are the same as in any other disease. The following are some general principles to consider before participating in a clinical study.
What does participation require?
What are the risks of participation?
What are the benefits of participation?
What are the costs of participation?
What information should be provided before participating in a study?
What are your rights? Questions you should ask
Other questions you may want to ask