Consortium ME/CFS CentersJanuary 6, 2018

NIH-Funded ME/CFS Consortium Centers

On September 27 2017, The National Institutes of Health (NIH) announced the outcome of its ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) competitive consortium grants, marking an unprecedented and tangible commitment from the federal agency to the disease. The NIH announced four recipient teams; one Data Management Coordination Center (DMCC) and three Collaborative Research Centers (CRCs).

The team selected to lead the development of the Data Management Coordination Center (DMCC) will serve as the keystone to centralize, share and standardize the data of the ME/CFS Collaborative Research Centers.

  • Rick Williams (RTI International) in partnership with Dr. Peter Rowe (Johns Hopkins School of Medicine (JHSM)) and Dr. Zaher Nahle (SMCI).

The three teams selected to lead the development of the Collaborative Research Centers (CRCs) represent an incredible breadth and depth of expertise from prestigious institutions.

  • Ian Lipkin (Columbia University) and team, with SMCI as collaborator
  • Maureen Hanson (Cornell University) and team, with SMCI as a collaborator
  • Derya Unutmaz (the Jackson Laboratory for Genomic Medicine, JAX) and team.

New Webpage home for SMCI’s ME/CFS Research Consortium projects coming soon!

As partners of the DMCC proposal led by Dr. Rick Williams (RTI), with Dr. Zaher Nahle (SMCI) and Dr. Peter Rowe (JHSM, SMCI RAC) as co-investigators, our organization is committed to advancing the field through big data analysis and electronic health record systems.

“We are thrilled to be part of that effort in what is a landmark turning point development for our disease,” said Dr. Nahle, Chief Scientific officer and VP for Research, the creator of these strategic partnerships

The forthcoming SMCI patient registry is a key component of the DMCC effort. As collaborators with the new CRCs lead investigators, Dr. Ian Lipkin (Columbia CRC), Dr. Maureen Hanson (Cornell CRC and SMCI RAC) and longtime SMCI colleague Dr. Derya Unutmaz (JAX CRC), we continue to create value and facilitate the work of all investigators, through the CRCs, DMCC, and beyond.

Carol Head, SMCI President, noted “The NIH consortium grants are a much anticipated commitment of federal funds to solve this devastating disease. We hope and trust these consortia, along with the NIH intramural study, represent the dawning of a desperately needed, rapid expansion of the Federal commitment to ME/CFS.”

The awarded proposals emerged from a competitive process in response to two funding opportunity announcements (FOAs) in January 2017. These grants are a mechanism by which federal agencies announce their intent to fund discretionary grants or cooperative agreements.

  • U54-designated FOAinvited applications for ME/CFS Collaborative Research Centers (CRCs); the goal of the ME/CFS CRCs is to create a network of specialized centers that will both advance independent initiatives and work collaboratively to establish the cause(s) of ME/CFS and work towards the development of improved treatments.
  • U24-designated FOAwas created to establish a Data Management and Coordinating Center (DMCC). The goal of the ME/CFS DMCC is to streamline and improve data management and sharing to support the efforts of the ME/CFS CRCs. The network of CRCs, linked with the DMCC, will create a robust infrastructure and bring a comprehensive and integrated approach to ME/CFS research.