The National Multiple Sclerosis Society is funding a new survey to understand how people living with multiple sclerosis (MS) weigh risks against benefits when choosing MS therapies. The survey was developed by Dr. Robert Fox, a neurologist, working with colleagues at the Cleveland Clinic and the MS patient registry NARCOMS.
MS is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. It has no cure, and treatment typically focuses on speeding recovery from attacks, slowing disease progression, and managing symptoms.
According to a National MS Society news release, while the risks and benefits of MS therapies are established, there is a lack of knowledge about how these factors are evaluated and perceived by people living with the disease. A clearer understanding of patient tradeoff decisions is crucial to clinicians, the healthcare industry, and regulators such as the U.S. Food and Drug Administration (FDA), when considering which therapies to develop, approve for use, and recommend.
The large-scale survey regarding preferences related to MS therapies, developed by the research team, is looking for patterns in a person’s risk/benefit analysis based on health status and other factors.
Anyone with MS can take part in the survey, which takes about 20 minutes to complete, and includes questions related to the disease, its therapies, and personal characteristics. The survey also includes many clinical scenarios, complemented by questions related to patients’ openness to risks in each scenario. In addition, the survey asks for opinions regarding the possibility of MS patient involvement in the government’s review of new therapies.
The Multiple Sclerosis Foundation estimates that more than 400,000 people in the United States, and about 2.5 million people around the world, have MS. About 200 new cases are diagnosed each week in the U.S. The ratio of women to men with the disease is about 2 to 1.
MS is not considered an inherited disorder, but researchers believe there may be a genetic predisposition to developing it. An estimated 15 percent of individuals with MS have one or more family members or relatives with the disease.
by Daniela Semedo, PhD
