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  • MS_Navigators
    Have you ever participated in clinical trials, surveys or other forms of MS research? What were your experiences? Would you consider participating again in the future? If you haven't participated in research studies in the past, what has kept you from doing so? What questions or concerns do you have?
  • TheBillLarson
    I was diagnosed at the end of March 2016. I have not been privvy to any trials, surveys, etc. in MS research, but I do think I would be open to participating in them. Well, maybe not the clinical trials but I don't know. Surveys would be no problem. I would certainly consider any opportunity that presented itself, but I can't assure that I would actually participate. My hesitancy for things like clinical trials is twofold. First, I'm about 19 doses in on Copaxone 40 mg 3X a week and I seem to be just fine on it. The second reason is that since my disease burden is low, I am still the primary "bread winner" in the family and I have a 4 year old son. At this point it is not high on my list of things to do to become a human lab rat. All this might change some day, but that is where I am at right now.
  • cherieb
    TheBillLarson wrote: I was diagnosed at the end of March 2016. I have not been privvy to any trials, surveys, etc. in MS research, but I do think I would be open to participating in them. Well, maybe not the clinical trials but I don't know. Surveys would be no problem. I would certainly consider any opportunity that presented itself, but I can't assure that I would actually participate. My hesitancy for things like clinical trials is twofold. First, I'm about 19 doses in on Copaxone 40 mg 3X a week and I seem to be just fine on it. The second reason is that since my disease burden is low, I am still the primary "bread winner" in the family and I have a 4 year old son. At this point it is not high on my list of things to do to become a human lab rat. All this might change some day, but that is where I am at right now.


    Bill, 
    You can certainly make a difference in the larger picture by filling out surveys for NARCOMS  (www.NARCOMS.org ) and/or iConquerMS (www.iConquerMS.org ) and complete the 4 or 5 basic surveys available on each site.   Membership is free and both organizations keep members in the loop about study results and offer opportunities to participate in trials that fit your individual profile.

    I was diagnosed in 1994 after 19 + years of relapes and remissions.
     
  • krsma
    Not sure how these opportunities should be discovered. I would possibly be interested in research studies and surveys, but clinical trials could be scary. However MS itself is scary and unpredictable so what the hell.
  • ms_navigator_sam
    Hi krsma,
    If you're interested in looking into studies, clinicaltrials.gov is a great place to start! You can type "multiple sclerosis" in the search bar then narrow by location.  
    Additionally, this is a great link to learn more about participatin in clinical trials:
    Guide to Participating in Clinical Trials
    I hope this helps!
    Sam
  • maria1
    Havent gone for any clinical trials, when i checked i did not fit the criteria.

    Did do the Take Charge of My MS study found on the research page of nmss.org, was most beneficial, so much so that I shared the notes for all here.

    Plenty of surveys, also on nmss.org research page. Wow, every survey gave me insight into things about me and ms. It is a great way to evaluate myself and to learn what researchers find important. Gives me the ability to discount a lot of what is going on as aberrations and not something to concern myself with. I also get to find ways to describe what is going on with me. It also is a fine way contribute to hopefully find some solutions, and to see what is going on in the research world for ms. At nmss.org I even got to participate in a research survey going on in other countries. Taking surveys is my way of helping solve some of the mystery of ms. It makes me feel goood to know I am part of the solution.
     
  • littledrumr
    My husband participated in a 'double blind' study where even the doctors didn't know which patients were receiving the actual drug and which ones were receiving a placebo. There were monthly trips to the hospital for testing, sometimes 1, 2 or 3 times a month. It made it difficult since I was working, and some of the visits lasted almost all day (but not all visits). The clinical trial lasted 3 years and in the meantime my husbands symptoms just got worse and worse. I got frustrated and at the very end was glad to be done.

    We received a letter almost 2 years later letting us know that my husband was one of the ones receiving the placebo :( I understand they need more patients that PPMS because they don't have that large of a testing base, but in my experience it's not something I would be interested in doing again unless we knew he was testing an actual drug that they thought might alleviate some of the more severe symptoms.
  • natalia0709
    I am currently in a study of two medications. It is a double blind study so I don't know which of the two medications I am taking and neither does the doctor. I really like it because I get to see and interact with my doctor and nurse frequently. I also get to see specialists such as a dermatologist and ophthalmologist.  To be completely honest I was very scared in the beginning because I didn't know what to expect. But now I am really glad I am doing it because I feel like in a way I am helping science to keep moving forward. 
  • Amy_MS_Mom
    I participated in a survey and would do it again.  When I went to the neurologist's office for a check up, the researcher would bring me paperwork periodicially as part of evaluating the longer-term effects of Gilenya.  It was easy and convenient.

    I'm not interested into doing a medicine trial.  My neurologist and I have had to change my current regiment often enough that I want to stick with the options that we've gotten worked out.
  • capitolcarol
    I'm in a clinical trial with Tysabari.  Bio-Gen is providing the Tysabari via OptumRx, they pay the almost $7,000  month, and I only pay the $25.00 co-pay.  I'm not thrilled with sitting for a monthly infusion, but they say statistically it has a better percentage of slowing the progression of MS.
  • frederick86
    I am wondering if there is any form of clinical trials, surveys or other forms of MS research that is dealing with people that can not have an MRI.  I can't because I have magnetic metal in my head.  I know that they now use titanium but there are people with pacemakers & other things that can not use a MRI either.
  • maria1
    Go to the nmss.org website, click on research, that will lead you to the clinical trials available.
     
  • juggalettestorm
    i would like to get into the surveys or trials of research im vering interested in learnining and discovering maybe a new way to treat this,  Theres always things people can do just a matter of finding out how.
  • bjbecker43
    I've done several surveys about my MS. I answered a lot of questions online or on the phone. One paid me $30 for a half hour of my time, which was greatly appreciated. There were a few that were a pain because they notified my Neuro. They were making sure that my having Fibromyalgia wasn't connected with the MS. They weren't, but they didn't take my word for it. Certainly!!! I would participate again.
  • cherieb
    For years I have participated in the twice yearly surveys generated by NARCOMS.  I am a member of the Research Committee of iConquerMS.org, the research arm of the Accelerated Cure Project for MS.  As such, my data and experiences of living with MS are available to be shared with researchers who request it.  I encourage all reading this to help us move closer to finding a cure or more effective therapies by logging on to www.iConquerMS.org and share your information toward that end.
  • cv3567
    I was laid off in 2008. To help me continue to receive a DMD, my doctor offered to enroll me in a drug trial. It was a little overwhelming with all the appointments (quarterly eye exams, dermatologist visits, MRIs, pulmonary tests, and appointments with the neurologist), but it was still very appreciated, since I was able to get all of those services for free, plus the free DMD and a small payment for my time and travel. 
    Once i was back to work, it was really difficult to get to all the appointments and I eventually dropped out just as the trial was ending. It was still a really good experience, though, and I was glad to be able to try to help the drug company find a DMD in pill form (at the time, only injections and IV treatment were available). I think the drug trials are a great option for people who can not afford regular medical treatment or who have the time to participate. 
  • Avatar
    I have participated in a drug trial for Fingolimod for PPMS. This drug was approved for other fragrances of MS in early 2008 but Primary Progressive had been with held from the trials so that several years later it could be trialed and if successful a new application could be claimed and so start the clock again on the patent. This meant that it could be sold to 90% of the market for about 7 years and then if successful to 100% of the market for the full duration of the patent at $3000/months worth. This enethical and immoral behaviour to extend their patent and the price they charge which is determined by how much can be squeesed ot of government subsidies like the PBS (taxpayers money) is a seriously corrrupt rort. The other issue here is leaving people with PPms out of earlier trials means that the drug is not available to them for aanother 7 years and there are currently no treatments for this flavour of MS available. The whole system is corrupt and needs reform. This not the only example of this type of corruption. There is a trial using hematapoietic stem cells in Melbourne. When I asked why they had excluded PPMS they said that there was no inflamation in PPMS so it wouldn't work. There is currently a trial of the same stem cell being run fro Canada in 9 countries which includes all types of MS and is investigating remyelination,
  • karankouren
    I haven't participated in clinical studies, reason's for this is;
    They still have not found a medication to help me with my M.S., I've been on 4 or 5, can't remember, but the side effects were terrible, hallucinations, black out's, severe rashes,....I could go on, if I have such a bad reaction to meds. already approved (and for some I know who are taking them are doing fine), I am fearful of what an unknown trial would do.

    Often the trials are in the larger cities, i.e., Minneapolis, I live in a small rural town, I am so fatigued all the time, just trying to get to one would be so hard for me.

    The unknown-too often the full side effects are not known...I am scared to even think about any of this.

    Though I'm on disability, I still work two jobs, both only part time, but I still need to be where I can have some income.

    It seems that I have participated in surveys, but it's been a long time and I don't remember of recieving any feedback on whether the information was even helpful.