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You Can Advance MS Research

October 18, 2017

The National MS Society is a driving force of MS research and treatment to stop disease progression, restore function, and end MS forever. The complexity of MS necessitates a comprehensive approach to address our most pressing research priorities – to accelerate research breakthroughs. And, the participation of people living with MS and their families is pivotal to research success. Opportunities vary from small to significant time commitment, and include the following.

Join a Clinical Trial
Carefully planned, controlled trials are necessary to develop safe and effective solutions for people affected by MS. Data from clinical trials can be used widely (while maintaining participant confidentiality) — for example, the MS Outcome Assessments Consortium has amassed data from 17 clinical trials involving nearly 15,000 people with MS in an effort to develop a more sensitive way to detect the benefit of potential treatments that slow or reverse progressive disability in people with MS. Assess each opportunity and make an informed decision before agreeing to participate — understand the possible benefits and risks. Read more in a Guide to Participating in Clinical Trials.

Join a Patient Registry
There are several efforts underway to capture experiences and opinions from people living with MS. These include the following, which are voluntary programs designed to collect data from individuals about about treatments, quality of life, and other factors related to living with MS. NOTE: Participants in iConquerMS are welcome to join NARCOMS, and those enrolled in NARCOMS are welcome to join iConquerMS.

NARCOMS (North American Research Committee on MS) is a voluntary, confidential registry that captures the real-life experiences of people living with MS. Participants supply valuable, de-identified information to researchers about themselves and their course of disease over time — that may lead to more effective treatments and care. NARCOMS aims to develop new collaborations between researchers, participants, and healthcare providers, while reducing the time and cost of conducting research.
  • Over 38,000 people have joined the registry, originally created by the Consortium of MS Centers (CMSC) in 1993.  Participants have been followed via semiannual surveys for an average of 6 years, with 20 years of follow up on more than 110 participants.
  • Over 100 peer-reviewed publications have come out of data collected through NARCOMS, including results from the largest study group to date of people living with MS-associated tremor.
  • Registry participants receive a complimentary copy of the quarterly NARCOMS Now magazine by mail or online.
  • Sign up online at NARCOMS or call 800-253-7884 weekdays 9 a.m.-5 p.m. CT to request a paper enrollment form.

iConquerMS,TM the people-powered research network for MS, empowers people living with MS to drive, shape and accelerate research.  iConquerMS members participate in a variety of ways including securely sharing health information via surveys, submitting their ideas for future research, and engaging with researchers to provide critical insights related to how research studies should be designed to best meet the needs and interests of people living with MS.  iConquerMS members have recently participated in a study related to insurance coverage, have weighed in on factors related to research participation and perceptions, have been invited to advise researchers on the design of a clinical study, and to provide input on the design of an auto-injector support device.  These are just some of the opportunities that iConquerMS members have contributed to with their experiences and expertise.
  • iConquerMS was launched by the Accelerated Cure Project for MS, a nonprofit organization with proven experience in developing and sharing resources with MS researchers worldwide.
  • As of June 2016, almost 4,000 people with MS had joined iConquerMS. iConquerMS was launched as part of PCORnet, a national network that encourages collaboration between patients, researchers, and others to make health research more efficient and powerful.
  • Join iConquerMS online.

Make Your Voice Heard by Responding to Surveys or Other Studies
The research community values your thoughts, ideas and questions about your experiences with MS and where research is headed, or should go. Today, people living with MS are driving and changing research in many ways through the Society and other organizations — and moving MS research forward, faster.

Surveys are often conducted by investigators seeking to answer scientific or health policy questions about MS, or by pharmaceutical or medical device companies conducting market research efforts to develop or improve products for people with MS.

Donate DNA 
DNA of people with MS, family members and even sometimes non-relatives are needed for genetic studies. More than 100,000 people have contributed DNA so far, and as a result we now know of 200 genetic variations that contribute to making people susceptible to MS. Studies continue, particularly in different populations, like African Americans or Hispanic/Latinos with MS. Blood samples also can be donated for use in MS research studies.

Donate Your Brain
Arranging for brain or spinal cord donation to a tissue bank; this type of donation, which should be arranged well in advance and in collaboration with your family, is incredibly valuable and truly appreciated by all who are involved in moving toward a world free of MS.  
 

About Multiple Sclerosis

Multiple sclerosis 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. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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