Notice Number: NOT-AR-18-021
Key Dates
Release Date: June 21, 2018
None
Issued by
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Heart, Lung, and Blood Institute (NHLBI)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Institute of Neurological Disorders and Stroke (NINDS)
Purpose
The NIH is assessing the Senator Paul D. Wellstone Muscular Dystrophy Research Centers Program (“Wellstone Centers”). For over 15 years, the Wellstone Centers program has served as a flagship program for muscular dystrophy research at the NIH. This evaluation will provide insights on how the Wellstone program can be enhanced. As part of the process, NIH is seeking written input through this Request for Information (RFI) from the muscular dystrophy research, healthcare, and patient communities, as well as any other interested parties.
Background
The Wellstone Centers promote communication and collaboration, develop and share research resources, and help train new researchers in aspects of muscular dystrophy. Each center may conduct a mixture of basic research to understand the diseases, translational research to turn basic research findings into interventions for patients, and clinical studies to understand how the diseases affect patients and to test interventions. The Wellstone Centers program is funded by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Institute of Neurological Disorders and Stroke (NINDS), with additional support from the National Heart, Lung, and Blood Institute (NHLBI).
Information Requested
The NIH invites interested people who have muscular dystrophy, health care providers, researchers, other individuals and organizations to address the following topics:
- The Wellstone Centers program’s key accomplishments.
- The Wellstone Centers greatest challenges.
- 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.
- Involvement of research participants, their families, health care providers, and other muscular dystrophy community members in Wellstone Center activities.
- The most compelling research needs in the muscular dystrophy field and the Centers’ potential role in addressing them.
- Additional opportunities for advancing research in muscular dystrophy within the Wellstone Centers.
How to Submit a Response
You may respond to this RFI by entering your input at https://wellstonemdcenters.nih.gov/niams-centers-programs-evaluation or writing to: WellstoneEval@mail.nih.gov.
Responses will be considered if submitted no later than August 10, 2018.
Responses to this RFI are voluntary, but will help inform NIH about how to strengthen and improve the Wellstone Centers program in the future. Any personal identifiers (e.g., names, addresses, email addresses, etc.) will be removed when responses are compiled. Only the de-identified comments will be used. Proprietary, classified, confidential, or sensitive information should not be included in your response. The Federal Government reserves the right to use any non-proprietary technical information in any resultant solicitation(s), summaries, or other materials.
This RFI is for information and planning purposes only and should not be construed as a policy, solicitation for applications, or an obligation on the part of the U.S. Government to provide support for any ideas identified in response to it. The NIH will not make any awards based on responses to this RFI or otherwise pay for the preparation of any information submitted or for the Government’s use of that information. The NIH will use the information submitted in response to this RFI at its discretion and will not provide comments to any responder's submission.
NIH looks forward to your input and we hope that you will share this RFI with your colleagues.
Inquiries
Please direct all inquiries to:
Jonelle K. Drugan, Ph.D., M.P.H.
Wellstone Evaluation Working Group
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Telephone: 301-496-8271
and Human Services (HHS)
