Multiple Sclerosis Research and You
Alicia Sloan, MPH, MSW, LICSW -- Seattle, WA
The MS Centers of Excellence (MSCoE) conduct research studies that focus on the special health care needs of Veterans with MS. Veterans with MS have a number of features that are different from the civilian population. They are more likely to be male since there have been more males in the military. They also tend to be more disabled and more likely to have a progressive form of MS. This is in part because men tend to have more aggressive MS. We conduct research to address these problems and more. We also seek ways to change the course of MS and improve functioning and quality of life of Veterans living with MS.
Our research often looks at the effectiveness of various interventions or lifestyle changes – like medication, counseling, exercise, diet, or dietary supplements. Studies also include “basic science” research done in a lab, testing medications, and evaluating non-medication interventions to help manage or improve symptoms or disability related to MS. Researchers look for patterns or correlations in studies to understand their meaning and impact. While some studies examine past data, others look at data collected in the present and into the future. Some studies intervene to see if changing a treatment in the present has an effect.
There are 4 main types of research conducted by our MSCoE researchers that address a full spectrum of health care needs of Veterans with MS.
- “Basic Science” research includes studies done in a lab to better understand life’s biological processes associated with MS.
- Clinical research includes clinical trials and rehabilitation research to study new treatments, compare existing therapies, evaluate non-medication interventions, and improve clinical practice and care. These may include pilot studies, which are smaller studies that help us decide whether to conduct a larger clinical trial. These studies sometimes involve a randomized control study where a study participant is randomly assigned to receive the experimental treatment, or a placebo (sugar pill) or comparison medication.
- Health Services research focuses on improving the delivery of health care to Veterans.
- Epidemiology research analyzes patterns, trends, causes, and effects of health and disease conditions in Veterans with MS.
Many of our research studies are funded by VA Research and Development grants. Some of our research is funded by outside organizations like the National Institutes of Health, National MS Society, and other organizations interested in supporting MS research.
Participating in MS Research
Many Veterans with MS find that participating in a research study can be very rewarding and interesting. Some Veterans feel like they are “giving back” and helping others with MS when they participate in a MS research study. It can provide an opportunity to help advance MS knowledge and move new treatments forward for everyone living with MS. Participating in a study may also be a way to gain access to a new treatment or innovative program before it is available to the general public.
MS Research Studies Can Help Provide:
- New methods to learn more about a specific problem related to MS.
- Better solutions for safe and effective treatments.
- A better understanding of effective and efficient health care services
- New solutions to treatment, side effects, and disability.
There may or may not be any direct benefits to you when participating in a MS research study. Your participation will help us understand more about MS and find solutions. It is entirely up to you to decide if you want to participate in a research study. The VA respects that participation in research is a choice and an important decision for you to make.
Safeguarding Veterans Information
VA researchers obtain permission to access VA databases that link to patient health information (PHI) to help answer questions on health care services and utilization. However, researchers only have access to PHI considered necessary for their study. This is determined by an Institutional Review Board (IRB). The IRB is made up of researchers, non-researchers, and experts who review each study for scientific merit and ethics. All VA research studies are required to get approval by the IRB and the VA’s Research and Development office before research can begin. The IRB approves all the procedures and questions that are asked by the study. They also know all staff involved in the study and the role of each study team member.
Finding an MS Research Study Near You
You might see a flyer or advertisement about a MS study in your VA, or see a study advertised on a website. You might decide to contact the study team to volunteer. You might also be approached by your MS doctor, clinic staff, or a research coordinator about a MS study during a VA appointment. You can also look up MS studies on the trusted government website www.clinicaltrials.gov.
Finding the Right MS Research Study for You
If you decide to participate in a MS research study, it is important to collect as much information as you can about the study. A study coordinator or member of the study team can explain all aspects of the study and review the consent form with you before you commit to participating in the study. You should feel comfortable about the study before agreeing to participate. You should know what the study involves, the risks and benefits of the study, the length of time for each study procedure, and what to do if you are injured or have side effects while participating in the study. Take enough time to think about the study before signing a consent form to participate. You should not feel any obligation to participate if you feel uncomfortable about it. You may decide after learning about a study that you don’t want to participate after all. Once you begin in a study as a participant, you have rights as a study participant. You have the choice to drop out of a study if you feel it is not right for you even after you begin the study. Sometimes life, health, or medical issues arise that affect your participation in a study or you change your mind about participating. All of these things are important to help you decide if participating in a research study is right for you.
The questions below may help you to decide whether volunteering for a specific research study is right for you:
- Who is doing this study and what questions might it answer?
- Who reviewed or approved this study?
- What could happen to my health if I take part in this study?
- What tests or procedures will I have during the study?
- How long will this study last?
- If I decide to participate, how will it affect my daily life?
- Will I have to make extra trips to the VA?
- Will I be charged anything or paid anything to be in this study?
- Who will be in charge of my care? Can I continue seeing my own doctor?
- Who will be told I am taking part in this study? What information will they receive?
- What happens to any specimens or blood work I give?
- What happens after the study ends?
- How do I end my participation in the study if I change my mind?
- Who do I contact for questions and information about the study?
MS research helps us to better understand MS and provide better care to people with MS. VA Research is unique because of its focus on health issues that affect Veterans. It is part of an integrated health care system and has come to be viewed as a model for superior bench-to-bedside research. You can learn more about MSCoE research on our research page and general VA research on the VA Research and Development website.
