CDC MCAM data posted in MapMECFS

Discussion in 'ME/CFS research' started by Medfeb, Oct 1, 2024.

  1. Medfeb

    Medfeb Senior Member (Voting Rights)

    Messages:
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    NIH's MapMECFS newsletter stated that the clinical data and biospecimens from CDC's Multi-Site Clinical Assessment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MCAM) study are now available on mapMECFS and searchMECFS. But it requires a request as below, not just an account, to access the data.

    From the newsletter
    The MCAM study was conducted between 2012 and 2020 at seven ME/CFS specialty clinical sites across the United States. The data from clinical assessments and biospecimens are available for 459 individuals with ME/CFS and 343 healthy controls. 
    Clinical Data Availability
    There are 13 datasets available on mapMECFS from this study include:
    Participant demographics 
    Physical examination (e.g. vital sign measurement, review of systems)
    ME/CFS-related symptoms
    Other symptom-oriented domain measures on fatigue, sleep, cognition, and pain
    Function-oriented measures on overall functioning and well-being​
    Researchers interested in the MCAM clinical data on mapMECFS may request access by submitting an application via the Propose an MCAM Data-Only Project webpage on mapMECFS.​
    Biological Sample Availability
    This study collected and preserved biospecimens (DNA, RNA, plasma, saliva) that researchers can request to conduct further analyses. For more information on how to request these biospecimens, visit searchmecfs.org. There is a Biospecimen Resource Access Committee (BRAC) that reviews and approves all requests for access to biospecimens.
    Administrators - I didn't see this posted elsewhere. If this belongs elsewhere, could you let me know. THanks
     
    Trish, Mij, MeSci and 8 others like this.

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