How Do You Weigh the Risks and Benefits of MS Treatments? Take a Survey Developed by Researchers Funded by the National MS Society
Summary: Investigators want to know how people living with MS weigh risks against benefits when choosing MS therapies. This 20-minute survey is funded by the National MS Society, and was developed by Robert Fox, MD, and colleagues at the Cleveland Clinic and the MS patient registry NARCOMS.
Rationale: Although the effectiveness and risks of MS therapies are well-defined, relatively little is known about how these benefits and risks are perceived and evaluated by people with MS. This benefit/risk trade-off is important for clinicians, industry, and regulators to understand when considering which therapies to develop, approve for use, and recommend. For these reasons, the Society released a targeted request for proposals on this topic. Dr. Fox and colleagues were awarded a Health Care Policy & Delivery Research Contract to administer a large-scale survey regarding preferences related to various benefits/risks of MS therapies. They are looking for patterns of how people weigh risks and benefits based on their health status and other factors.
Goal: The results should provide a deeper understanding of various perspectives concerning risks and benefits of MS therapies among the various stakeholders involved in the development and use of MS therapies: people with MS and their care partners, clinicians, industry, and regulators such as the U.S. Food and Drug Administration.
Eligibility and Details: All people who have MS are invited to participate. The survey has a series of questions related to MS, MS therapies, and other personal characteristics; several clinical scenarios accompanied by a series of questions related to your willingness to take risks in each scenario; and questions about how you think people with MS should be involved in the government’s review of new MS therapies. The survey should take about 20 minutes to complete.
If you have questions about the survey, please contact MSregistry@narcoms.org, or 1-800-253-7884.