A large-scale online survey, funded by the National Multiple Sclerosis Society and developed by researchers, is investigating how multiple sclerosis (MS) patients perceive and evaluate the risks and benefits of available therapies.
Investigators encourage MS patients to participate in the survey, titled “Multiple Sclerosis Risk Tolerance,” which can be accessed and completed through the initiative’s website. The goal is to provide MS stakeholders, such as clinicians, researchers, and industry regulators, with a deeper understanding of how patients choose and perceive treatments and recommendations, according to a Society news release.
MS is an unpredictable and debilitating central nervous system disease characterized by neuronal demyelination, and currently affecting an estimated 2.3 million individuals worldwide, according to the National MS Society. MS therapies’ risks, benefits, and efficacy are well-known and studied, however, not much is known about patients’ perspectives and decision-making process.
Such knowledge is important for clinicians and care partners, but especially for the pharmaceutical industry and regulators, such as the U.S. Food and Drug Administration (FDA), so that more informed therapy development and treatment recommendations can be made. This need led the Society to request relevant research proposals.
Dr. Robert Fox, MD, and colleagues at the Cleveland Clinic and the MS patient registry NARCOMS, an active database of over 37,000 MS patients, were awarded a Health Care Policy & Delivery Research Contract to assess, with their large-scale study, the preferences related to benefits and risks of MS therapies, and patterns in such evaluation based on patients’ health status and other factors.
All people with MS are eligible and encouraged to participate. The survey includes a series of questions regarding MS, available disease treatments and related topics. Participants are also presented with several different clinical scenarios and a series of questions that aim to assess their willingness to take risks. Questions regarding patient involvement in government decisions regarding MS therapies are also included.
The survey takes about 20 minutes to complete. A helpline, 1-800-253-7884, and an email address, MSregistry@narcoms.org, have been set up to take questions that participants might have.