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CMSC INforMS: MS Patients Take Part in Survey of Risk/Benefit Considerations in Choosing Treatments

Thursday, April 07, 2016  
Posted by: Elizabeth Porco
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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.

To participate in the Multiple Sclerosis Risk Tolerance Survey, click here.

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

Multiple Sclerosis News Today

CMSC Disclaimer The industry news information and articles are for informational purposes only, and are not intended to represent any trends, partnerships, commitments, or research of the Consortium of MS Centers or any of it's members in any way whatsoever, nor should any party be libel in any way to the reader or to any other person, firm or corporation reading this industry news section. Although the CMSC site includes links providing direct access to other Internet sites, CMSC takes no responsibility for the content or information contained on those other sites, and does not exert any editorial or other control over those other sites. CMSC is providing information and services on the Internet as a benefit and service in furtherance of CMSC's nonprofit and tax-exempt status. CMSC makes no representations about the suitability of this information and these services for any purpose.


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