MEadvocacy's Comment To NINDS/CDC CDEs Draft & See What You Can Do

[Nielk]

Read MEadvocacy's comment to NINDS/CDC CDE draft and see what you can do.

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.

 

[Gemini]

Read MEadvocacy's comment to NINDS/CDC CDE draft and see what you can do.Read entire blog here.

Thanks for posting MEadvocacy's Public Comment, @Nielk. I used the link in my Comment as follows:

I commend the sponsors of the ME/CFS CDE Project and efforts of those who produced the Draft under review.

To improve the effectiveness of this worthwhile Project, I support MEadvocacy's recommendations: http://www.meadvocacy.org/meadvocacy_s_comment_to_ninds_cdc_cdes_draft_see_what_you_can_do

Regards the need for new questionnaires designed specifically for ME, the "objective" evidence collected and recorded by ME experts and clinicians over the past three decades should be included in the CDE Project. It along with the Biomarkers Subgroup's important recommendation to study ME patients with co-morbid illnesses will guide ME subgrouping and personalized treatment research.

I look forward to reviewing future ME/CFS CDE Drafts.

 

[Wally]

Thank you @Nielk for posting this information.

I had tried to get a group advocacy project going here at Phoenix Rising to write up a sample comment for members to review, but I came down with a second bout of the flu and I have been M.I.A. until receiving an alert this afternoon about today’s initial deadline for commenting on the CDE’s.

(My apologies to those who signed up to work on this project that did not hear what had happened to me on following thru to get this project complete. The message (conversation), I thought I had sent out to you that I was sick with the flu appears to have not gone out. )

Note - I have cut and pasted the information in the ME Advocacy blog and informed the NIH that I am adopting the comments in the blog in their entirety and I would like my comment to be added to their list of public comments received in response to their Draft ME/CFS Common Data Elements.

The initial deadline for comments was set for 5:00 pm (EST) today, January 31, 2018, but as pointed out in ME Advocacy’s blog, public comments will be accepted after January 31st.

Please note - CDE instructions state: After January 31, 2018, feedback can still be sent at any time through the website or by emailing NINDSCDE@emmes.com. Proposed changes will be brought to the oversight committee (OC) for review.

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See, http://www.meadvocacy.org/meadvocacy_s_comment_to_ninds_cdc_cdes_draft_see_what_you_can_do