Participating in a Multiple Sclerosis Research Study

Vicki Health Guide
  • Okay, I know clinical trials last for years, so a mere summer may not get it done. However, one of those days when it's just too hot to go outside can be spent finding a research program that is just right for you. You can apply, sign up, or even take a survey that is part of a study without even having to leave your home. You may as well get started.


    Clinicaltrials.gov


    A good first step to find a clinical trial is
    Clinicaltrials.gov, a registry of federally or privately supported trials. Enter a condition, drug, sponsor, or even a location of interest. The display lists tests designated as completed, active, or recruiting. When you find one that is you would like, scroll down to check if you are eligible. Then go back up the page for trial details to see exactly what will be expected of you.

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    ResearchMatch.org


    If you haven't found a trial yet, don't give up. Join
    ResearchMatch.org. UT Southwestern Medical Center is one of 50 institutions across the country that match people who are interested in participating with researchers looking for volunteers. Once you register, your anonymous profile may be searched by authorized researchers. You may receive a small amount of information about the study. If you say yes, your contact information is given to the researcher so you can get detailed information and then decide if you want to participate.

    Some research projects are long clinical trials, and they may require travel. Some studies are surveys that can be completed at home. Research projects may be designed in any format, and their researchers may register to look for volunteers. ResearchMatch.org was started just last year, and is growing rapidly. More researchers and volunteers are being added all theĀ  time.


    National MS Society


    Another good source is the National MS Society. There are currently 14 surveys studying
    various topics. Included are uncontrolled laughing, functional performance, how people control their postures, Mothers with MS, and "Hidden Disabilities" with college kids.

    If questionnaires are not what you were thinking about, try other studies that involve answering questions as well as giving a blood sample or possibly giving permission to access medical records.

    This is more than one study trying to increase information on genetics in MS. One sub-study is to determine the genetic basis of MS. Another is studying more than one case of MS in the same family. Still another is to study the incidence of MS in African-American patients.

    Then there is another test for people with MS in addition to another autoimmune condition such as Rheumatoid Arthritis or Type I Diabetes. Also, if you have MS and another member of your family has one of the conditions on the list, your whole family may qualify for the study. Aren't they always asking what they can do to help? Here it is. This study also requires a phone questionnaire and submitting blood.


    Now here's another idea - donate your organs. Can someone with MS donate organs? In my research I have found it asked many times but rarely answered. Donation screening occurs only before organs and tissue are recovered for transplant. Apparently, many people with chronic conditions assume it cannot be done so they do not even register. I am registered, and I hope my donation helps someone or maybe even everyone with MS.

    An organ or tissue can definitely be donated for research.

    • Body tissue and brain tissue is greatly appreciated by MS research labs. Brain tissue and spinal fluid are particularly valuable for research. You can say you really did donate your brain to science! Tissue donation is best if taken within hours after death, so planning is essential.

      This is such a great idea, and I think we should tell more people who are probably questioning if a donation can be useful, or just assuming it cannot. The National MS Society (NMSS) funds three tissue banks and provides contact information for a fourth.

      What we do for ourselves dies with us.
      What we do for others and the world
      remains and is immortal. ~ Albert Pine

      NMSS also reminds us that "Umbilical cord blood is being studied for potential use in a wide variety of life-threatening diseases because it is a rich source of blood stem cells." Umbilical cord donators should contact the blood bank by the 35th week of pregnancy. What could be more exciting and gratifying than welcoming your new baby and contributing to a world free of MS?

      One of my favorite online friends, Michael B. Gerber, has an inspiring tag-line he places at the end of every post: Participate. Make a difference. Live a life that matters. Participating in a research trial or study might be just the summertime project to do that makes a difference. This is one way to live a life that does matter.

      All of these studies include providing information that may be helpful in finding the cause or just understanding more about living with MS. And they don't take too much time out of your life, but they all make a valuable contribution to MS research. What a good thing to do on a hot summer day!


    Published On: July 14, 2010