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SolveCFS BioBank Open Enrollment - Announcement!!!

Discussion in 'General ME/CFS News' started by jspotila, Jun 8, 2010.

  1. jspotila

    jspotila Senior Member

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    In today's webinar about the SolveCFS BioBank, the CFIDS Association announced new General Enrollment Criteria. This new criteria opens the BioBank to many more participants. Under General Enrollment, participants will provide their clinical information. When/if a participant meets the criteria for an approved study, blood and tissue samples will be collected according to the requirements of the study.

    This General Enrollment process will make it easier and faster for researchers to get studies underway. Traditionally, selection and collection can take 9 to 12 months. The SolveCFS BioBank not only cuts that time dramatically, but enables sample collection to be customized to the needs of a particular study.

    The full eligibility criteria are available at solvecfs.org but in summary:
    • Diagnosed with CFS by a licensed physician using Fukuda or Canadian criteria
    • Required to have post-exertional malaise
    • Required to have significant cognitive impairment

    There are additional eligibility and exclusionary criteria. To learn more and to get involved, go to solvecfs.org. Also PLEASE encourage your friends, family and neighbors to participate! The BioBank needs control subjects too!

    Again, for full information and to begin the consent process go to http://www.solvecfs.org/
  2. Anika

    Anika Senior Member

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    Thanks for posting this - I signed in to the webinar but kept getting interrupted by a repairman so I missed this part.

    This can be a tremendous resource for research. One of the problem with so many CFS studies is that it's hard to get enough numbers of patients, especially if they're trying to fit them into certain criteria (e.g., age groups, length of illness, with or without FM, etc.). While there are some types of studies that need to have a local cohort of patients who can make visits to the research center, etc., plenty of studies do not. This allows for geographic diversity and I suspect the cost is less.

    I did hear the comment made by the woman from the biobank organization that a lot of phlebotomists won't charge the patient for drawing the blood (or only do a nominal charge for materials) if they know its for a research biobank, because they think the idea is "cool." Neat and keen, too.

    Anika
  3. jspotila

    jspotila Senior Member

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    The way the infrastructure is set up, the Association will be able to search for specific criteria and then collect those samples. So if a researchers wants to look at men between the ages of 18 and 55 with OI symptoms and sudden onset, the Association will be able to find the participants who fit that criteria, send out collection kits and provide samples to the researcher. The time and cost savings to the researcher will be enormous.

    More research, better cohorts, faster reporting of results = WIN for the CFS community!
  4. BEG

    BEG Senior Member

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    This is really great news, Jenny. Thanks for posting.

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