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US Residents Only: New Federal Gov't Studies Registry

Discussion in 'Other Health News and Research' started by Hope123, Feb 16, 2010.

  1. Hope123

    Hope123 Senior Member

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    (I have placed this here to try to garner more attention rather than Active Clinical Studies since this isn't really a study. Feel free to move if needed.)

    The National Institutes of Health (NIH) has just started an online registy where you can sign up as a potential volunteer for future studies. As many of you know, NIH is the biggest funder of medical research in the US and possibly the world. We all know research is vital to solving this illness and coming up with treatments.

    - A large part of the delay/ cost in studies is due to the time needed to find adequate numbers of people interested in participating.

    - Aside from delays, when not enough people participate, the conclusions of a study are less solid. A significant results might not be seen because not enough people were in the study. Conversely, results that aren't really significant might be picked up erroneously.

    - In the worst case circumstance, studies are abandoned entirely when there are not enough participants.

    - In the case of CFS especially, it makes sense for those of us who are concerned about which people are actually selected for CFS studies to get registered.

    This is a joint federal-academic medical centers project. Many large universities are involved. What happens is once you put in your info, researchers can then search the database for people interested in their specific study who live in their geographic area. The researchers do not get your name/contact info. An e-mail is sent to you if there is a study that fits your medical condition. You select whether you allow the researchers to contact you directly and get more details. Info is kept confidential and you can quit the system anytime. No fees/ no obligations to be part of studies. (This is easier for us too - no need to check for active clinical trials regularly.)

    Note that healthy people can also volunteer as healthy controls. You can put down in the comments section of registry you would be wiling to be a control for a CFS study.

    Less than 10 minutes to register:

    www.researchmatch.org

    (For those outside the US, it's possible this might be expanded later.)

    (OK to re-post elsewhere)
  2. RestingInHim

    RestingInHim Realist

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    Riverside, CA, USA
    Thanks Hope!

    Thank you for posting this! I will immediately sign up. Your right...what a saver of time and frustration for those of us who want to contribute to the research.

    Resting now...in one more area : )
  3. creekfeet

    creekfeet Sockfeet

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    Eastern High Sierra
    I paused in the middle of filling out the questionnaire at that site, to report my delight that the conditions search recognizes Myalgic Encephalomyelitis---despite this being a US-based organization. When I then entered "chronic fatigue syndrome," just to cover all bases, I received an error message stating, "we believe you have already entered this condition." Love!
  4. Tammie

    Tammie Senior Member

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    Woodridge, IL
    apparently they changed the questionnaire so that it no longer accepts M.E. as a diagnosis......does still have CFS
  5. Hope123

    Hope123 Senior Member

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    I think it is important that as many people as possible participate in this project.

    Although CFS/ME suffererers and advocates might vehemently disagree on this condition being called CFS, this research database is not the venue to debate about a name change. On the practical side, most medical researchers in the US refer to our condition as CFS and this is what they will look for when trying to find people for their studies. If you decide to participate in a study, as I mentioned above, it would be stacking the deck in our favor.
  6. Kati

    Kati Patient in training

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    If I could, I would... However I am in Canada, just 30 miles north of the border....

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