Simon
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From Mariam Emr, On behalf of the Trans-NIH ME/CFS Working Group
The slides from the NIH presentation at the IACFSME meeting in Ft. Lauderdale, Florida have been posted. You can view the slides at https://www.nih.gov/sites/default/files/research-training/initiatives/mecfs/whittemore-presentation.pdf
Short version (my take)
Long-term (FY18-22) it's much as you'd hope
Medium term (FY17-18)
Also:
• Encourage Investigator-initiated grants submitted through parent grant announcements [ anyone explain this??]
• Encourage submission of applications from young investigators to develop pipeline of investigators
Also
Short-term included the request for information to help establish research priorities (which will presumably be announced at some point)
- and focusing on "Common data elements" for all studie (a CDC priority too), which will help multiple centers work together in building longitudinal cohorts. I hope these will include developing one for PEM, whih hasn't yet been defined well by anyone (as a questionnaire for patients).
I thought this was quite promising overall, and a long way forward from where things stood a couple of years back. But read the slides yourself and make up your own mind.
The slides from the NIH presentation at the IACFSME meeting in Ft. Lauderdale, Florida have been posted. You can view the slides at https://www.nih.gov/sites/default/files/research-training/initiatives/mecfs/whittemore-presentation.pdf
Short version (my take)
Long-term (FY18-22) it's much as you'd hope
Though I'm a little disappointed that new RFAs doesn't seem to be a priority til then "Develop new RFAs as appropriate" as current RFA plans are around building infrastructure and research capacity, not directly funding studies.Ultimately, to improve the quality of life for all individuals with ME/CFS
Support the development of new therapies and treatments for ME/CFS [via new Collaborative centres and efforts to speed the process from bench discoveries to bedside treatments]
Medium term (FY17-18)
Well, that certainly seems to be the meat of it, though it's not at all clear this will involve RFAs to spur research until they are 'considered' in 2018.• Trans-NIH CFS/ME Working Group developing an extramural research program to support studies on the cause, prevention, diagnosis, pathophysiology and treatment of ME/CFS
Also:
• Encourage Investigator-initiated grants submitted through parent grant announcements [ anyone explain this??]
• Encourage submission of applications from young investigators to develop pipeline of investigators
Also
- Work with FDA to develop clearly defined endpoints for treatment trials and interventions
- Develop mechanisms for access to available biospecimensfor potential identification of biomarkers
- Launch ME/CFS Collaborative Research Centers and ME/CFS Data Management and Coordinating Center
- Foster and develop international collaborations and partnerships to foster ME/CFS research
- Assess clinical trial readiness and potential treatment and intervention trials for ME/CFS
- Leverage CDC health care provider educational materials
Short-term included the request for information to help establish research priorities (which will presumably be announced at some point)
- and focusing on "Common data elements" for all studie (a CDC priority too), which will help multiple centers work together in building longitudinal cohorts. I hope these will include developing one for PEM, whih hasn't yet been defined well by anyone (as a questionnaire for patients).
I thought this was quite promising overall, and a long way forward from where things stood a couple of years back. But read the slides yourself and make up your own mind.