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SolveCFS Biobank Beginning

Discussion in 'General ME/CFS News' started by jspotila, Mar 29, 2010.

  1. jspotila

    jspotila Senior Member

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    Full text of announcement can be found on the SolveCFS website, including criteria for participation, consent form, etc.

     
  2. jspotila

    jspotila Senior Member

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    CFIDSLink Story on Biobank

    A special CFIDSLink announcement went out today that explains how the Biobank idea was developed and how it fits into the Association's research program overall.

     
  3. Gerwyn

    Gerwyn Guest

    how many of the patients will have post exhertional fatigue as mandatory
     
  4. CBS

    CBS Senior Member

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    Jennie,

    This is very impressive. I've read through the CFS patient and control criteria for the first phase and it is thorough. This is exactly the type of work that needs to be done. It addresses so many of the "Did they really use CFS patients in their study?" questions that have plagued CFS research for decades.

    Thank you for your efforts.

    Shane
     
  5. CBS

    CBS Senior Member

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    Gerwyn,

    The guidelines state that participation requires subjects meet the Fukuda or Canadian Consensus Dx criteria. Here's the link to the Solve CFS Biobank criteria: http://www.solvecfs.org/SOLVECFSBIOBANK/CURRENTSTUDYCRITERIA/tabid/105/Default.aspx

    Page Four, Item #2. I think the answer to your question is that anyone not experiencing post-exertional malaise (as defined by the Canadian or Fukuda criteria) will not qualify.

    Again, way to go CAA.
     
  6. Gerwyn

    Gerwyn Guest

    If that is true then my hat is truly off!
     
  7. shrewsbury

    shrewsbury member

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    Fantastic news! Now to make sure that all researchers use it.
     
  8. Cort

    Cort Phoenix Rising Founder

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    Here's the criteria for the first collaboration. They're using standard Fukuda criteria and focusing on these types of patients:

    I imagine they won't be hard to find. These physicians have been doing this for years. You have to have PEM to be diagnosed by the Canadian Criteria; nice to add in the one of the documented immune abnormalities in ME/CFS.

     
  9. CBS

    CBS Senior Member

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    PEM and Fukuda or Canadian

    The first phase of subjects must have been diagnosed with CFS by one of only four clinicians:

    Gerwyn, Note my underline and the correction to my earlier post.

    And either meet either Fukuda or Canadian consensus Dx criteria - (sorry, having a bit of a brain cramp day).
     
  10. Cort

    Cort Phoenix Rising Founder

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    What is the 'first collaboration'? Are these physicians engaging in a study? Or is this the first group of physicians to contribute specimens to the biobank?

    If this really gets going it could really speed things up for us. Research will be cheaper and faster. Researchers will be able to ask for less money (more chance of getting funding). Given that CFS is such a vague condition researchers will love to get their hands on well defined patients. Just the fact that we're in this international Genetic Alliance network will help; it means that the CAA and ME/CFS passed through whatever hurdles they imposed. That confers more legitimacy on us.

    What I really hope is that researchers start snatching these samples up and get going on their studies. We've all waited too long for the: one and half years to prepare a proposal and see if it gets funded, two years to do it, one year to write it up, one year to get it published model This has to cut that down. Because you have a well characterized cohort you should get better results. Since you have alot of data on that cohort you can go back and mine it.

    One thing I really like is how smart the CAA was to get into this network. They never could have done it on their own - obviously don't have that kind of money.

    Where does the CAA plan to get its funding to expand the project from? Are they applying for grants? How much do they need?

    It would be interesting to see the data patients are providing. Any one have any questionnaires?
     
  11. jspotila

    jspotila Senior Member

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    Here is the weblink of the BioBank announcement. My quote in post#2 did not have the hyperlinks in it.

    Post-exertional malaise lasting more than 24 hours is required in order to be eligible under current study criteria. There are a number of other required criteria which you can read here.

    Cort asked a number of questions about the collaborations, etc. Dr. Vernon will be doing a webinar explaining the process, sample collection and so on. The announcement of the BioBank includes some additional information, and more will be made available as soon as possible without violating confidentiality and other issues.

    Cort also asked about funding. We are seeking support and hope to have diversified funding from individuals, foundations, grants and industry to ensure that the BioBank is a sustained resource for many years. The more funding we have, the more samples we can include in the BioBank. One of the reasons the Board approved creation of the BioBank through Genetic Alliance is that it is scalable.
     
  12. Gerwyn

    Gerwyn Guest

    unless they all have post exhertional malaise then there is little point.This is not mandatory in FUKUDA.post exhertional malaise is the only sure way of excluding people with depressive illness and is the key symptom of mitochondrial dysfunction

    The minimal criterea for feduka dont cut it
     
  13. Hope123

    Hope123 Senior Member

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    Well, it's good to hear the details about this and I am glad that acute onset is being emphasized in the current criteria. Although acute vs. chronic onset may or may not distinguish CFS in the future, the fact that so many come down with this acutely and that this group is more easily definable than chronic onset (with a multitude of factors) argues for it being good initial working criteria.

    I realize that there are legalities around this but I sincerely hope that the CAA will eventually make the results of any studies done available to individuals who participate in these studies. (i.e. you get to know your own individual and not just group results) There was a recent review article in one of the major journals about what researchers can to do increase participation and one of the top factors was participant interest in their own results. Indeed some research groups already do this. This might also help convince clinicians that something biological is happening as participants bring back results to their docs even if tests are not validated yet.

    I also hope the CAA send out a press release to all CFS researchers/ clinicians about this to generate interest.
     
  14. starryeyes

    starryeyes Senior Member

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    Hope, thanks for writing that out. I'm very brainfogged and didn't catch that. Shorter posts are easier for me to comprehend right now.

    This looks great! :)
     
  15. Cort

    Cort Phoenix Rising Founder

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    I'm really not worried about mood disorder patients. These aren't psychologists who are going to get fed alot of mood disorder patients; they are well known ME/CFS experts whom CFS patients usually find after a long search through other doctors. Since they've been doing this for so many years these doctors know in their bones know what a CFS patient looks like. We're not going to get mood disorder patients masquerading as CFS patients in this group. I'm not worried about that.

    I see Jennie pointed out that PEM is required :) . So good news. :)

    This is the first time that I know of that PEM is required in study subjects - that's been a long time coming!
     
  16. Robin

    Robin Guest

    I've never participated in research before. Is it standard to exclude results from patients?
     
  17. Hope123

    Hope123 Senior Member

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    Robin, this is what I was alluding to in my post above. It's very common that participants do not know their individual results which is why the JAMA paper on increasing patient participation is interesting in that it points this out as something to consider changing in the future.
     
  18. jspotila

    jspotila Senior Member

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    Regarding the fact that BioBank participants will not receive individualized test results, this was a requirement by Genetic Alliance's IRB (Internal Review Board). I understand why patients, especially CFS patients, would want individualized results. I always wished that I could have results from the studies I participated in years ago. As I said, this is a requirement from the IRB, and the pros of creating a BioBank in this incredibly economic way have to be weighed against other interests/concerns. It is essential that any patient who donates to the BioBank be fully informed and give true consent. Each individual can and should make the choice based on the factors important to him or her.
     
  19. creekfeet

    creekfeet Sockfeet

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    Well, dang, I've got some great endometrial tissue coming available on the 9th of April, but I doubt I can get sufficiently qualified by then. I know I fit the strictest criteria but haven't had doctors who ran very thorough tests. Just a lot of "complete" blood counts, a chest xray, nonsense. Oh yeah, EBV +. And diagnosis is CFS and Fibro. So, chances of getting qualified in time to make use of all that great glop?
     
  20. Kati

    Kati Patient in training

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    Creek, you need to have been diagnosed by only the 4 doctors mentioned in the document-

    That's too bad because it would be great to put your endometrium to good use.
     

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