Follow-on to NIH P2P release of Federal Partners Meeting Report

[Denise]

As a follow-up to the P2P meeting, NIH convened a federal partners meeting in May.
The report from that meeting was sent out today.

 

[Hutan]

Page 5

Build on existing biorepositories for the collection and sharing of biospecimens.
The focus should be on efficiently leveraging existing biorepositories rather than creating new ones. A centralized biorepository would be invaluable for diagnostic standardization, which is currently lacking in the field.

Talking about the US, but relevant to MEGA. (Given that MEGA seems now to be simply a proposal for a big biorepository with attached questionnaire data and promises of biomedical research at some later time.)

 

[Simon]

Conclusions and Next Steps

The key recommendations from the Federal Partners Meeting are:

1. Develop Common Data Elements utilizing existing resources at the NIH, CDC and from ME/CFS clinicians and researchers where possible.
   
2. Operationalize the FDA Guidance for Industry on Developing Drugs for ME/CFS to more fully capture the patient’s perspective in interventional clinical trials.
   
3. Leverage the resources and infrastructure developed to support the CDC multisite ME/CFS study.
   
4. Enhance collaboration between federal agencies through increased communication and partnering opportunities where feasible.
   
5. Enhance communication with ME/CFS stakeholders through shared webinars, conference calls, and other methods as appropriate.

These efforts will provide collaborative opportunities for the federal partners to address the key P2P panel recommendations—to define the ME/CFS disease parameters, increase knowledge about the condition, improve available clinical methods and measures, and better educate and train stakeholders—with the ultimate goal of relieving the personal and societal burden of ME/CFS.