Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Follow-on to NIH P2P release of Federal Partners Meeting Report

Discussion in 'General ME/CFS News' started by Denise, Dec 10, 2016.

  1. Denise

    Denise Senior Member

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    As a follow-up to the P2P meeting, NIH convened a federal partners meeting in May.
    The report from that meeting was sent out today.
     
    AndyPR, Valentijn, Sean and 3 others like this.
  2. Hutan

    Hutan Senior Member

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    New Zealand
    Page 5

    Talking about the US, but relevant to MEGA. (Given that MEGA seems now to be simply a proposal for a big biorepository with attached questionnaire data and promises of biomedical research at some later time.)
     
  3. Simon

    Simon

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    Monmouth, UK
    Conclusions and Next Steps

    The key recommendations from the Federal Partners Meeting are:
    1. Develop Common Data Elements utilizing existing resources at the NIH, CDC and from ME/CFS clinicians and researchers where possible.
    2. Operationalize the FDA Guidance for Industry on Developing Drugs for ME/CFS to more fully capture the patient’s perspective in interventional clinical trials.
    3. Leverage the resources and infrastructure developed to support the CDC multisite ME/CFS study.
    4. Enhance collaboration between federal agencies through increased communication and partnering opportunities where feasible.
    5. Enhance communication with ME/CFS stakeholders through shared webinars, conference calls, and other methods as appropriate.
    These efforts will provide collaborative opportunities for the federal partners to address the key P2P panel recommendations—to define the ME/CFS disease parameters, increase knowledge about the condition, improve available clinical methods and measures, and better educate and train stakeholders—with the ultimate goal of relieving the personal and societal burden of ME/CFS.
     
    Sean, Dolphin, Snowdrop and 2 others like this.

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