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SolveCFS Biobank, Who is supporting this on this forum?

Discussion in 'Active Clinical Studies' started by *GG*, Jun 12, 2010.

?

Are you going to participate?

  1. Yes

    85.0%
  2. No

    15.0%
  1. *GG*

    *GG* Senior Member

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    Concord, NH
    I sent in my paperwork yesterday, anyone know how long it takes to get the paperwork etc?

    I have 2 Dr appt early next week!
     
  2. jspotila

    jspotila Senior Member

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    Once the office receives your consent form, they'll send you the clinical questionnaire. We have two staffers working on the BioBank now, so hopefully it will be a quick turnaround for you.
     
  3. Cort

    Cort Phoenix Rising Founder

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  4. jspotila

    jspotila Senior Member

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    The questionnaire is designed to help people assess whether or not they have CFS. If a person has already been diagnosed, then just email the BioBank to get started!

    biobank AT solvecfs DOT org
     
  5. CateK

    CateK

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    I would like to, but I just don't have the energy to wade through the web pages and decipher the exclusion conditions and how they apply to me. I do wish the web pages were set up for brain-fogged folks :ashamed:
     
  6. jspotila

    jspotila Senior Member

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    CateK, I am sorry that you are having trouble with the web pages. Rather than struggle with the brain fog, you might want to consider emailing the BioBank at biobank@cfids.org. They can answer any questions that you have.
     
  7. CateK

    CateK

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    upstate New York
    Thanks for responding! I'll do that.
     
  8. *GG*

    *GG* Senior Member

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    Now I see your point, my bad. If someone else wants to do this they can, I don't think I will. FYI
     
  9. jimbob

    jimbob ME/CFS84-XMRV+

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    I'm in the biobank, but they're not using me!
     
  10. jspotila

    jspotila Senior Member

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    Are you referring to the BioBank collecting your clinical information but not blood samples? If so, I can explain a little bit. Processing and storing one person's blood samples costs $400 or more, depending on what kind of processing is being done. The Association wants to expand the BioBank as quickly as possible, but paying the $400 tab per person would significantly limit the expansion. Instead, the BioBank is collecting the clinical information for inclusion in the database. When a researcher needs a cohort, the database can be searched (for example, women over 40 with illness for more than 10 years - purely hypothetical) and the precise cohort assembled. At that point, blood samples (or cheek swabs) would be collected for that study.
     

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