Multiple Sclerosis Research and You
The MS Centers of Excellence (MSCoE) study the health needs of Veterans living with multiple sclerosis (MS). Veterans with MS are different from the general population in a few key ways. Most are male, since more men have served in the military. Veterans with MS also tend to have more severe disability and are more likely to have a progressive form of the disease. This is partly because MS in men tends to be more aggressive.
MSCoE researchers work to understand these challenges and find ways to slow MS, improve how people function day-to-day, and raise quality of life for Veterans with MS.
Research topics often include:
- Medications and their effects
- Counseling and mental health support
- Exercise, diet changes, and dietary supplements
- Lab-based studies on how MS works in the body
- Non-medication ways to manage symptoms
The 4 Types of MS Research
MSCoE researchers conduct four main types of studies that cover the full range of health care needs for Veterans with MS:
- Basic Science. Lab studies that help scientists understand how MS affects the body at a biological level.
- Clinical Research. Studies that test new treatments, compare existing ones, or try non-medication approaches. Some use randomized control trials, where participants are randomly placed in a treatment or comparison group.
- Health Services Research. Studies that look at how to improve health care delivery for Veterans with MS.
- Epidemiology Research. Studies that look at patterns, trends, causes, and effects of MS in the Veteran population.
Many MSCoE studies are funded by VA Research and Development grants. Others are supported by outside groups such as the National Institutes of Health, the National MS Society, and other organizations that care about MS research.
Taking Part in MS Research
Many Veterans find that joining a research study is rewarding. Some feel like they are "giving back" and helping others with MS. Participating in a study can also give you access to new treatments before they are available to the public.
How MS Research Studies Can Help
- Find new ways to learn about specific MS-related problems
- Develop safer and more effective treatments
- Improve how health care is delivered
- Create new solutions for symptoms, side effects, and disability
Keep in mind: there may or may not be a direct personal benefit to you. But your participation will always help advance our understanding of MS. The choice to join a study is completely yours. The VA respects that this is a personal and important decision.
How Your Information is Protected
VA researchers must get permission before accessing any patient health information (PHI). They only see data that is needed for their specific study. Each study must be reviewed and approved by an Institutional Review Board (IRB) before it can begin.
The IRB includes researchers, non-researchers, and other experts. They review every study for scientific quality and ethical standards. They approve all study procedures and questions, and they know who is on each research team and what role each person plays.
How to Find an MS Research Study
There are a few ways to learn about MS studies near you:
- Look for flyers or ads at your VA clinic
- Your MS doctor, clinic staff, or a research coordinator may ask you during a VA visit
- Search for studies on the government website www.clinicaltrials.gov
Choosing the Right Study for You
If you are thinking about joining a study, take time to gather information first. A study coordinator can walk you through all the details and go over the consent form with you before you commit. You should feel comfortable before agreeing to participate.
Make sure you understand:
- What the study involves
- The risks and possible benefits
- How long each part of the study takes
- What to do if you are hurt or have side effects
Do not feel pressured to sign up. Even after you join, you have the right to leave the study at any time for any reason.
Questions to Ask Before You Join
- Who is doing this study, and what questions will it answer?
- Who reviewed or approved this study?
- What could happen to my health if I take part?
- What tests or procedures will I have?
- How long will the study last?
- Will it affect my daily life or require extra VA trips?
- Will I be charged or paid for participating?
- Who will be in charge of my care? Can I still see my own doctor?
- Who will know I am in this study, and what will they be told?
- What happens to any blood or tissue samples I give?
- What happens after the study ends?
- How do I leave the study if I change my mind?
- Who do I contact with questions?
MS research helps us better understand this disease and improve care for everyone living with it. VA research is unique because it focuses specifically on issues that affect Veterans. Learn more about VA research on the VA Research and Development website.
Based on an article by Alicia Sloan, MPH, MSW, LICSW.
