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.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the