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WPI Bio Bank - the world's largest ME/CFS sample repository

Discussion in 'General ME/CFS News' started by shrewsbury, May 3, 2010.

  1. shrewsbury

    shrewsbury member

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    Bio Bank

    Bio banks have historically been pivotal in determining the etiology and pathogenesis of many diseases, including MS, hepatitis B & C, cancer and AIDS.

    History of the Whittemore Peterson Institute Bio Bank:

    The Whittemore Peterson Institute felt it important to build a modern bio bank when it first began in 2006. This bio bank, funded and created through the non-profit organization, was developed to support the study and understanding of the cause of illness in thousands of physician diagnosed ME/CFS, fibromyalgia, atypical MS and autism patients from around the world. The WPI's bio bank is made of over 8,000 specimens, fully catagorized and coded, and is the cornerstone of the WPI research program. Using these samples and the associated clinical data we and investigators world-wide are beginning to unravel the causes of the disease. With support from the Nevada ME/CFS foundation, Pat Fero and the Wisconsin Chronic Fatigue Syndrome Association, WPI repository is now the world's largest ME/CFS sample repository containing:

    * More than 8000 samples
    * Fully categorized, searchable database of patient and sample data

    Dr. Daniel Peterson understood the promise that a historical bio bank could bring to scientific understanding thus he began collecting and storing patient samples in the early 1980's. However, it is important to note that no samples from this historical bio bank were used in the Institute's XMRV studies.

    FAQs about the Whittemore Peterson Institute Bio Bank

    * What is it? [view answer...]

    WPI repository is made up of over 8,000 well-characterized and coded samples.

    * When was it created? [view answer...]

    All samples were collected from 2006-2009, under the WPI's research department with signed patient consent forms.

    * Where did the samples come from for the XMRV study? [view answer...]

    The WPI repository samples came from patients who live in many different locations around the US. Physicians who contributed patient samples include: Dr. David Bell, Dr. Paul Cheney, Dr. Daniel Peterson, and Dr. Eric Gordon. Other individual patient samples came from individuals who became ill while living in California, Wisconsin, South Dakota, etc.

    * How were the patients diagnosed? [view answer...]

    Patients were physician diagnosed using the Canadian Consensus criteria and the CDC criteria and after exclusion of other inflammatory and autoimmune diseases.

    * Were any patients with lymphoma mentioned in the XMRV study? [view answer...]

    Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication.

    * What about Dr. Peterson's private repository? [view answer...]

    Dr. Peterson has a repository of samples from the original out break in Incline Village, Nevada which also includes longitudinal samples taken from patients from the 1980's through 2005. None of these samples were used in the XMRV study.

    For more information about depositing tissues or donation opportunities please contact us via email at: info@wpinstitute.org
  2. Gerwyn

    Gerwyn Guest

    Shame Dr vernon could not be bothered to read it instead of jumping to conclusions.very scientific I,m sure.That info has been in the public domain since before XMas.all it required was a phone call or an e mail.i e mailed Judy M and had the info within 20 min!Beyond the CAA it seems.
  3. Frickly

    Frickly Senior Member

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    Very weird....I was just looking at the wpi site this morning and noticed the biobank. Then I wondered why the CAA is spending it's time and energy and MONEY on one when we already have one!
  4. Cort

    Cort Phoenix Rising Founder

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    That's a very good question Frickly! Why create another one?

    I guess from these two statements

    that none of the specimens Dr Peterson originally collected over 20 years or so are in the BioBank.

    If that's true then they've managed to collect an enormous # of samples very quickly! Good for them. BioBanks present tremendous opportunities for research. I imagine the WPI's is already paying off in both in the XMRV research and in its other research projects.

    It would be interesting to know how the two biobanks differ and why the CAA decided to create their own.
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I see no problem in two biobanks.

    WPI's is set up for their own research. CAA's is for many others.

    I think it is a good check and balance to have both.

    Tina
  6. Frickly

    Frickly Senior Member

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    I know little about setting up a biobank but imagine it costs a great deal of money. If you already have a large biobank which I am confident WPI would share with other researchers, why spend the money when it could go towards research? Again.....I don't know much about these things but this did cross my mind. Cort, I would also be very interested to know why the CAA felt the need to create another one. Could you do an interview with the CAA on this biobank so that we might all know the answer to that question? :)
  7. Cort

    Cort Phoenix Rising Founder

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    I'm sure someone who knows will jump in altho I will ask Suzanne. It could be that the WPI as Tina mentioned is using their BioBank mostly for their specific projects. The WPI is mostly looking at immune issues while the CAA is looking at a variety of issues; autonomic nervous system problems, mitochondrial problems, gut issues, vascular problems ... one BioBank might not be enough for a disease with so many different issues. The CAA's Biobank is also part of a large scheme involving an International Research Network and and a Databank and an attempt to create standards for research. They may feel the need for their own bank to tie into this large project. Its possible that the two biobanks differ as well.

    Whatever the reason I think both are a boon to us. Both should help to reduce the cost of research and increase the pace of research.
  8. Frickly

    Frickly Senior Member

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    Thanks Cort. I would really like to know more about these two biobanks and how they differ. Hopefully, someone will come along and enlighten us? :) Could you tell me more about the International Research Network and Databank? Sorry if this has been posted elsewhere but it is difficult to keep up with the huge flow of information.
    Thanks,
  9. Gerwyn

    Gerwyn Guest

    It would be much better if they looked at something causative rather than something that had at best be peripheral.If they want to look at mitochondria the work already exists all they need to do is replicate it with more patients.The whole point of trial work is to test explanatory hypotheses.There is no model to test in gut issues,vascular issues or autonomic nervous systems .those abnormalities have already been revealed.These issues cannot explain the spectrum of symptoms in ME/cfs.XMRV can via the insertional mutagenesis revealed by Silverman into CREB and NFAT genes.The WPI is looking at the cause of the illness.The CAA are not
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    YES. Finally a real scientist says what I have been thinking. Go after the cause. Our community has very limited resources.
    I'm donating to the WPI.


  11. Hope123

    Hope123 Senior Member

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    Frickly, I asked Jspotila (who has kindly answered questions about the CAA for us on this board) about this on two separate threads when the CAA Biobank came out why they didn't merge with the WPI. Her post was something to the effect that the group the CAA works with (Genetic Alliance) had some reasons that they didn't want to work with an another outside group. It still wasn't all that clear to me why they didn't merge, if this was thought of beforehand, etc. So if Jspotila wants to elaborate fruther or Cort wants to ask, I'd be interested.
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Before XMRV, I think CAA was looking first for biomarkers. And I think they still have that as a main focus.

    Tina
  13. jspotila

    jspotila Senior Member

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    The Association wanted to create a BioBank that would be available to many researchers, that would be customizable in terms of samples and processing of samples, that would store clinical data (medical history, etc),and that would have a customizable and searchable database. The most cost effective way we found to do this was to use the Genetic Alliance infrastructure.

    I think it is fabulous to have more than one BioBank. We know there are 1 million people with CFS in the US alone. That's a lot of samples to gather and maintain, and it will take more than one organization to do it!
  14. Frickly

    Frickly Senior Member

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    Thank you jspotila!
  15. shiso

    shiso Senior Member

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    I agree, Tina. I don't see a problem with two organizations maintaining two separate biobanks to make reliable blood samples available for research on behalf of all ME/CFS patients.

    I've contributed what I can to both organizations, and feel good about it.

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