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Ms Paths??

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  • Ms Paths??

    I am a patient at Cleveland Clinic Mellen Center. I received a letter from them that they wanted to use my MRI's, blood work, etc. as part of their new research study. Just wondered do you all allow your medical information to lots of studies? How do I know it is something I should do? Are there ever problems with having all your information out there? I want to do all I can to stop this disease but not sure what are good things to do like this?? Hope this makes sense. Here is a link I found that tells about MS PATHS


  • #2
    MS Paths

    Hi Cindy,

    I've had MS since 1980 and have participated in one study...the first double-blind study of Avonex. Unfortunately, I received the placebo. Fortunately, the study was so successful that they cut it short and I was one of the first patients to receive Avonex after the FDA approved it.

    As you say, research helps everyone. It can't hurt to contact these researchers to ask them about your security concerns. (Usually there are strict guidelines about patient information and, of course, there is also HIIPA to protect you). Also, speak with your doctor about it.



    • #3
      Thank you. I was only diagnosed 3 years ago and still "stumbling" through everything. I will contact my Dr at Cleveland.