News MS Patients Asked to Take Part in Survey of Risk/Benefit Considerations in Choosing Treatments MS Patients Asked to Take Part in Survey of Risk/Benefit Considerations in Choosing Treatments by Patricia Silva, PhD | April 7, 2016 Share this article: Share article via email Copy article link 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. Print This Page About the Author Patricia Silva, PhD Patrícia holds a PhD in medical microbiology and infectious diseases from the Leiden University Medical Center, Netherlands, and completed a postdoctoral research fellowship at the Instituto de Medicina Molecular, Lisbon, Portugal. Her work in academia was mainly focused on molecular biology and the genetic traits of infectious agents such as viruses and parasites. Patrícia earned several travel awards to present her work at international scientific meetings. She is a published author of several peer-reviewed science articles. Tags Cleveland Clinic, MS therapies, NARCOMS, National Multiple Sclerosis Society, risks, survey
April 22, 2024 News by Marisa Wexler, MS AAN 2024: Briumvi found to ease disability in certain MS patients
April 22, 2024 Columns by Desiree Lama Learning to manage cognitive impairment with multiple sclerosis
April 19, 2024 News by Lindsey Shapiro, PhD AAN 2024: Earlier Ocrevus lowers MS progression risk over 10 years