Common Data Elements (CDEs) for ME/CFS

The ME/CFS CDE Working Group and the National Institute of Neurological Disorders and Stroke (NINDS)/Centers for Disease Control and Prevention (CDC) CDE Team has recently released a draft version of the ME/CFS CDEs for public review, which has been divided into eleven subgroups covering baseline information and details about a variety of symptoms.

The CDE Working Group has opened up a public review period, and are asking that reviewers look at the CDEs and make comments on any portion of the recommendations based on their expertise. Comments can be sent by email to NINDSCDE@emmes.com, in the provided template response spreadsheet, or via annotations within the documents.

NINDS has stated that after the public review period, the ME/CFS CDE Working Group will review and revise the recommendations as needed, and version 1.0 of the ME/CFS recommendations will be posted at the end of February 2018.

To review the CDEs and comment or make recommendations, click here. 

The deadline for commentary on the CDEs is January 31, 2018. 

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