How You Can Help Guide MS Researchby Lisa Emrich Patient Advocate
Multiple sclerosis (MS) is a disease of the central nervous system that has no single known cause and limited treatment options. The currently available disease-modifying therapies for MS affect the immune system in one way or another with the intent to interfere with the body’s attack on myelin — the insulation that surrounds and protects nerves. When the nerves lose their covering through a process called demyelination, axons do not carry messages to and from the brain as efficiently as they should. Persistent demyelination leads to neurodegeneration, which results in permanent disability and disease progression.
Scientists around the world are actively investigating ways to prevent demyelination and to encourage remyelination and neuroregeneration. Much of this type of research occurs in petri dishes and mice, but it is very important and has the potential to positively impact people diagnosed with MS and other neurological diseases. Organizations that fund research have important decisions to make and questions, one of them being: “Where would the money best be invested?”
Deciding which research projects have the greatest chance of success can be a challenge. This is why funding opportunities, such as those offered through the Multiple Sclerosis Research Program (MSRP) — part of the Department of Defense (DoD) Congressionally Directed Medical Research Program (CDMRP) — will seek the assistance of experts in various fields of medicine and research to review the merit of each research proposal submitted.
In addition to scientific reviewers, the DoD seeks the assistance of consumer reviewers to help gauge the impact of proposed research to make a positive difference in how disease is treated, or to advance the field of research. Consumer reviewers are often people living with a specific disease, a family member affected by the disease, or another related stakeholder who represents the interests of those facing a disease. For the past two years, I’ve served as a consumer reviewer for the MSRP funded by the DoD. You may even find a familiar face within the MSRP 2018 program book.
Each consumer reviewer is nominated by a non-profit organization such as the National Multiple Sclerosis Society (NMSS) or the Accelerated Cure Project for MS (ACP). Over the past several years, I have also served as a reviewer for research proposals submitted PCORI, the Patient-Centered Outcomes Research Institute. It’s a lot of hard work to read the often-300-page proposals and to summarize the merits or deficits of a potential research project. Despite what one might think, research funding is a very competitive field and every detail matters.
Participating in a research study of any new experimental MS therapy is important, but that’s not the only way to get involved in research. Here are a few ways that people living with MS can make a difference:
If you have strong analytical skills, you might serve as a stakeholder reviewer for funding opportunities, as I have done. Contact one of the larger MS nonprofit organizations involved in MS research and let someone know that you would be interested in being nominated to serve. It’s a rewarding experience.
If you want to help advance non-pharmacological research, you could volunteer for studies where primary investigators are often thrilled to have people with MS participate from various corners of the country. I still receive holiday letters from a research team in Illinois for whom I wore a motion-detecting devise for three weeks at different points in time and filled out some surveys as part of a project looking at the effects of physical activity on quality of life in people with MS.
If you want to contribute information about your personal experience with MS through surveys and participating in events, you can join iConquerMS™, a project of ACP, to partner with others who care about MS researcher. The Accelerated Cure Project for MS recently joined forced with the National MS Societyto speed the pace of research for cures and treatments for MS. As a member of the Governing Board of iConquerMS, I was very excited about this development.
If you learn of a research opportunity, tell others about it whether in a local support group or on social media. Not every project will be a perfect fit for every individual, but it’s nice to help the researchers meet their recruitment goals.
Ultimately, researchers need patient participation; patients need to use their voices to influence better research; and together we need to do what we can to improve the lives of others living with MS now and in the future.