POLL: CFS registry idea

Discussion in 'Fibromyalgia Main Forum' started by Lichu3, Jan 16, 2007.

  1. Lichu3

    Lichu3 New Member

    Hi, all,

    What I've noticed is that NIH/ some patient groups sponsored national voluntary registries for various diseases. (Google "NIH and rare diseases network" or "Alpha One Foundation" for examples.) Basically, interested people could put their contact info into a secure database that would be available to specific researchers who could contact them for various studies. No cost to participants or researchers.

    I thought this might be helpful for CFS because:
    1) Although not a rare disease, since only 10% of us are diagnosed per CDC, we need to make ourselves known.

    2) Studies of CFS are based on low numbers of subjects and since CFS may be caused by multiple reasons, having a small number of subjects results in mixed conclusions. (E.g. the CDC study "disproving" the role of HHV-6 years ago only had 26 CFS subjects )Having a larger pool of subjects to draw from could help with dividing people into subsets and individualizing future treatments.

    3) Promote research in CFS. Having a readily accessible group of subjects saves researchers time and cost in recruiting subjects. For example, if more families could be identified with CFS, this would help with research into genetic causes.

    4) Could result in the largest epidemiological survey of CFS if basic clinical/ demographic info is also collected.

    I'm taking an informal poll. If people are interested in something like this, I will pursue it further with the national CFS organization/ researchers to see if this would be something they are interested in.
  2. Slayadragon

    Slayadragon New Member

    Yes, I hope you will please pursue.
  3. shar6710

    shar6710 New Member

    I think its a great idea.

  4. elliespad

    elliespad Member

    I would register.
  5. apl

    apl New Member

    That's a terrific plan!

    Would it be possible or beneficial to see if this can be coordinated and hosted by a pre-existing CFS patient advocate?

  6. sturg1

    sturg1 New Member

    I too would be interested!
  7. springrose22

    springrose22 New Member

    I would definitely register. Marie
  8. Lichu3

    Lichu3 New Member

    Yes, I would try to get the national CFIDS organization to consider sponsoring. My plan is to contact them (to see if they're interested) and perhaps the Alpha One Foundation and see how they went about creating their database. Other key sponsors might be the researchers and the clinics/ universities they work for. This might take quite a bit of effort/ time to create but it may be worth it for the information it yields.
  9. 545

    545 New Member


    How's the registry idea going?

    I've also thought that it would be great to get some registry or database going, if not so much for research, then at least for *us*. It's really disenheartening that there's so little treatment availdable, and perhaps if we could pool together different patterns of symptoms among ourselves (afterall, it seems like CFS probably has many subtypes), along with different things that worked/didn't, tests that proved to be more helpful than other tests, course / onset, etc., we could make some headway ourselves. While I'm sure that, in the end, we're best off getting every sort of blood/liver/brain test done that we can get our hands on, maybe this would save time/money/mental energy, at least in the short run (something like remedyfind.com, but more comprehensive / just for us). At the least, it'd *feel* productive, and perhaps we could include some of those questions that we're simply curious about, like the personality issue or looking young...As everything would be self-report, it certainly wouldn't have scientific rigor, but, at the least, regardless of cause, many of us are united in that we're tired, can't find medical causes despite spending boatloads of $$, aren't being taken seriously by most of the doctors we see, etc -- things that might or might not constitute a medical diagnosis, but certainly unite us in some way..

    I don't know, what do you think?

    I also saw an earlier post from you about getting full text for journal articles. If you / anyone else is interested, I'm currently a grad student in clinical psychology, and I could email you passwords for online databases.
  10. BobinGermany

    BobinGermany New Member

    Count me in...
  11. Lichu3

    Lichu3 New Member

    I'm going to visit the Canadian website first and possibly talk to the people who created the registry there to see how they went about it.

    Then I can contact the U.S. CFIDS association about starting something similar and say "Canada already has one, why can't we?"

    By talking to the Canadian groups, I can also prepare for any roadblocks along the way - e.g. funding/ maintaining a database, U.S. privacy laws about transmitting personal health information across the internet,etc.

    Thank you for offering me the chance to get access to medical databases. Chat doesn't work for me with my old computer currently but I'm getting a new one this week and when it's up and running, I can post on the board and give you my e-mail over chat - I'm trying to get access first through my university alumni association.

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