You Can Advance MS Research
June 1, 2016
The National MS Society is a driving force of MS research and treatment to stop disease progression, restore function, and end MS forever.
The participation of people living with MS in research is pivotal to research success
- clinical trials which 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.
- donating DNA for genetic studies — more than 80,000 people have contributed DNA so far, and as a result we now know of nearly 200 genes that contribute to making people susceptible to MS. Studies continue, particularly in different populations, like African Americans or Hispanic Latinos with MS.
- responding to surveys or other studies conducted either 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.
- arranging for brain or spinal cord donation to a tissue bank; this type of donation is incredibly valuable and truly appreciated by all who are involved in moving toward a world free of MS. Blood samples also can be donated for use in MS research studies.
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
You also can advance MS research by sharing your voice
The research community values your thoughts, ideas and questions about where research is headed, or should go. “MS research is not just about biology — it’s about everyone contributing their questions, ideas, solutions and time,” says Society Chief Advocacy, Services and Research Officer, Tim Coetzee, PhD. “We can only get to a world free of MS together.” 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.
empowers people living with MS to complete surveys about daily experiences and symptoms, share medical records, and suggest research topics and questions; steps are taken to protect privacy and safeguard identity. Responses are pooled with information from thousands of other people, and then used by researchers to detect patterns that would not be visible otherwise — to build insights into the causes of MS, who will respond best to various treatments, and new, improved treatments. For example, in 2015 the iConquerMS community was invited to share their thoughts on depression and other mood issues. This input was used to develop a funding proposal for a study comparing two types of Internet-based mental health treatments for people with MS.
- 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 May 2016, almost 3,000 people with MS had joined iConquerMS. This online portal 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. Registrants can receive updates on what researchers are learning from all the collected data.
- Join iConquerMS online.
(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 studies.
Participants in iConquerMS are welcome to join NARCOMS, and those enrolled in NARCOMS are welcome to join iConquerMS.
- More than 37,800 people have joined the registry, originally created by the Consortium of MS Centers (CMSC). Participants have been followed for an average of 6 years, and NARCOMS expects to reach 20 years of follow up on over 110 participants in 2016.
- More than 100 publications have come out of data collected through NARCOMS, including in 2015, the largest study group to date of people living with MS-associated tremor.
- Sign up at NARCOMS or call 800-253-7884 weekdays 8 a.m.-5 p.m. CT.