Nielk
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Read MEadvocacy's comment to NINDS/CDC CDE draft and see what you can do.
Read entire blog here.
The Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Common Data Elements (CDE) Working Group and the National Institute of Neurological Disorders and Stroke [NINDS]/Centers for Disease Control and Prevention (CDC) CDE Team released their draft version of the ME/CFS CDEs for public review on 12/15/2017. Public comments are to be submitted by 1/31/2018.
The general NINDS CDE section explains the purpose of the CDEs as follows:
“Many of the CDEs will overlap across study types, which allows for comparisons and meta-analysis across studies. Consistency of the data elements and the CDE formats is kept in order to ensure the ability to transfer critical medical information electronically from one center to another. This consistency also allows for continuity across different disease areas. The goals of the NINDS CDE initiative are to increase the efficiency and effectiveness of clinical research studies and clinical treatment, increase data quality, facilitate data sharing, and help educate new clinical investigators.”
MEadvocacy’s Concerns
MEadvocacy.org has vigorously advocated for the adoption and use of criteria created by ME experts, like the International Consensus Criteria (ICC), for selecting individuals for research. The aspired goal is to make sure the cohorts being studied include patients who suffer from the same disease (ME) - in exclusion of those suffering from other conditions or idiopathic fatigue.
Read entire blog here.