The first draft of the ME/CFS Common Data Elements (CDE) project is now available to review, conducted by the National Institute of Neurological Disorders and Stroke (NINDS).
Read the first draft of the Common Data Elements for ME/CFS here.
The purpose of the CDE Project is to standardize the collection of investigational data in order to facilitate comparison of results across studies, and more effectively aggregate information into significant metadata results.
NINDS strongly encourages researchers who receive funding from the institute to use these common data elements (CDEs) in their clinical research. Researchers who receive funding from NINDS are asked to use the CDEs in their case report forms (CRFs) and data management systems whenever possible.
The RECOVER-Treating Long COVID (RECOVER TLC) The Path Forward
The RECOVER-Treating Long COVID (RECOVER TLC) Kick-off Meeting was Sept 23-25 in person and over Zoom. I had the privilege of attending over Zoom and Jaime Seltzer, #MEAction’s Scientific Director, represented the needs of the ME community in person and as an invited member of a panel on clinical trial design. There were many speakers