Vicki,
Great post!! You've pulled together such wonderful resources for people to help contribute to research, and to research that research going on.
I'm wondering though. Where did you find reference of a study/test for people who have MS and something else, or who have a family member diagnosed with another autoimmune disease? I couldn't find it listed at clinicaltrials or on the NMSS website. Maybe I just looked in the wrong place.
But I'd really be interested in that one since I live with MS and RA, and my mother also lives with other diseases.
Hi Lisa,
I thought of you when I saw that. It was under the Genetic
After the family and African-American subtitles, there is one that says MULTIPLE AUTOIMMUNE DISEASE GENETICS CONSORTIUM (MADGC). Currently it asks for multiple family numbers. I wonder if they keep it up to date and remove tests that have been filled with enough participants.The only one I see tonight is for multiple family members. When I published, they were still asking for individuals with two conditions, hoping to find genes common between them.
While I was writing, I noticed one disappeared and I had to remove it.
However, scroll down and click on Learn more about this NIH-funded study
which takes you to the MADGC site, but you have to go down a level or two for more information. On the NMSS site it says "2 or more," but the site says "at least 4" family members.
This particular test may not be the best one. Or maybe the individuals with two condtions or only two family members tests have been satisfied or filled. Hopefully, that is the answer. Try going to CONTACT US and give them your information.
Sorry. After that one disappeared I should have just said to look at NMSS to see what they may be offering today.
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Vicki, great posting! I started looking for trials to participate in when I was diagnosed in 2003. Unfortunately for me and a lot of MS sufferers, I live in a rural area and the trial locations require driving a fair distance. Since I cannot drive except around town (anything longer and my legs go dead), I was left out of all of the really great trials. Then the University of Washington contacted me about just doing surveys in their research of pain and MS! I was so delighted! AND they even pay me for it and my husband when he has one to fill out. SO all you MSers out there in rural areas, check around for survey type research and trials. THey are there if you look for them. And if you don't find one, get yourself put on a list for future consideration.
Blessings to ALL!
Jan
Good idea. There are so many research studies, and they are compiled by observation, surveys, and other means of data collection.
People who live in rural area or who cannot travel for any reason can still participate in phone surveys or mailed surveys. There is a saying about finding a way if there is a will. You have shown us your will found a way. Good for you!