SMCI begins work with NIH-funded Centers

The National Institutes of Health (NIH) recently committed a grant package totaling 35-million dollars over five years to support three ME/CFS Collaborative Research Centers (CRCs) and one Data Management & Coordinating Center (DMCC) in the United States. While the funding is still inadequate compared to other diseases, this represents a significant step forward in the commitment of federal dollars to ME/CFS:

In the wake of the announcement, the groups began initial meetings and collaborative sessions, invigorating the long-term efforts with a strong start. Dr. Zaher Nahle, serves as co-Investigator on the DMCC and collaborator with the two of the CRCs. In this capacity, Dr. Nahle participated in two preliminary meetings to-date:

Dr. Vicky Whittemore and Dr. Joe Breen, key NIH staff in support of the CRCs and DMCC, at the consortium kickoff meeting in December

Consortium Meeting at NIH

NIH hosted a meeting, organized by our DMCC partners, in December 2017, that included representatives from all the centers and key NIH personnel. Dr. Rick Williams of RTI International will lead the DMCC in partnership with Dr. Peter Rowe of Johns Hopkins School of Medicine and Dr. Nahle. The DMCC provides an overarching structure to centralize and standardize data from the CRC research teams. RTI International brings modern analytics and advanced data processing systems to this effort. The ME/CFS Common Data Elements (CDE) and the national patient registry (under development by SMCI) are well-positioned to incorporate with the DMCC.

Dr. Nahle noted the “meeting asserted the palpable commitment by all stakeholders to this public-private partnership dedicated to ME/CFS. We are moving forward methodically with unwavering steps towards solving this disease by unraveling its multifaceted mysteries piece-by-piece.

Dr. Nahle and Dr. Unutmaz, Primary Investigator of the JAX Center, share a moment at the consortium meeting

Cornell Collaborative Research Center

Dr. Maureen Hanson, a longtime SMCI collaborator and Research Advisory Council member, and her colleagues at Cornell University hosted a kickoff meeting of the Cornell ME/CFS Collaborative Research Center at the end of 2017.

Planning meetings will continue throughout early in 2018.

Throughout this process, from the funding opportunity announcements to the establishment of the four centers, SMCI has worked to contribute to this important national consortium. We will continue to serve as a credible partner, foster collaboration, and provide regular updates to the community as the Centers develop their research proposals.