For the last 15 years, the NIH has funded centers of excellence program mandated in the MD-CARE Act, the Senator Paul D. Wellstone Muscular Dystrophy Research Centers Program. The University of Rochester was the recipient of one of the first, and is the longest continuously funded Wellstone Center. It has taken a flagship role in its focus upon myotonic dystrophy, serving as the hub of the Myotonic Dystrophy Clinical Research Network.

Wellstone Center Primer

The Wellstone Centers Program currently includes six centers of excellence, focusing on the various types of muscular dystrophy. Only one current Wellstone Center, that at Rochester, has a focus on myotonic dystrophy. The Wellstone Centers Program was recently re-competed, with three existing Centers competing with new applicants for awards to start in September 2018.

Wellstone Centers are required to “promote collaborative basic, translational and clinical research and provide important resources that can be used by the national muscular dystrophy research communities.” Each is currently required to be led by an accomplished Director and Co-Director and to include: two or more collaborative projects (at least one focused on clinical research), an administrative core, a scientific research resource core, and a training core. Renewing Centers and new applicants compete in two cycles, with three Centers awarded in each cycle. Awards are made for up to $1M total direct costs/year, for 5 years.

Opportunity for Feedback on Future Course of the Wellstone Centers Program

One outcome of a National Academy of Sciences study is that NIH is required to seek input from stakeholders on large centers of excellence programs, such as the Wellstone Centers. To this end, the NIH has released a Request for Information (RFI) to solicit feedback from all stakeholders on how the Wellstone Program can be enhanced.

The RFI asks for input on the following areas:

1. The Wellstone Centers program’s key accomplishments.
2. The Wellstone Centers greatest challenges.
3. Research and training resources shared by the Wellstone Centers. If you have utilized Wellstone Center resources, please share how you became aware of these resources and your experience with obtaining and using them.
4. Involvement of research participants, their families, health care providers, and other muscular dystrophy community members in Wellstone Center activities.
5. The most compelling research needs in the muscular dystrophy field and the Centers’ potential role in addressing them.
6. Additional opportunities for advancing research in muscular dystrophy within the Wellstone Centers.

Responding to the Wellstone Center RFI

The Wellstone Program represents a major investment in muscular dystrophy research and will optimally serve the myotonic dystrophy community if shaped by the best ideas. MDF strongly encourages those living with muscular dystrophy, their families, clinicians, researchers, advocacy organizations, and other individuals and organizations to review information on the site and respond to the RFI via the link in the announcement below.

Responses are due by August 10, 2018.

NIH Announcement:

Request for Information (RFI): Evaluation of the NIH Senator Paul D. Wellstone Muscular Dystrophy Research Centers Program
(NOT-AR-18-021)
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Heart, Lung, and Blood Institute
Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institute of Neurological Disorders and Stroke