Key Dates

Related Announcements

None

Issued by

National Institute of Neurological Disorders and Stroke (NINDS)

National Heart, Lung, and Blood Institute (NHLBI)

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Purpose

The purpose of this announcement is to request comments and suggestions from the public on draft priorities for the 2025 renewal of the Action Plan for the Muscular Dystrophies.  
This Action Plan is a ten-year strategic planning document of gaps and opportunities for research and strategies for improving the lives of affected individuals developed by the Muscular Dystrophy Coordinating Committee (MDCC).

Background
The MD-CARE Act of 2001 (Public Law 107-84) established the MDCC “to coordinate activities across the National Institutes and with other Federal health programs and activities relating to various forms of muscular dystrophy.”  The Act directed the MDCC to develop a plan for conducting and supporting through the agencies represented on the committee a broad range of research and education activities relating to biomedical, epidemiological, psychosocial, public services and rehabilitative issues for people living with muscular dystrophy.  The committee approved the MDCC Action Plan for the Muscular Dystrophies in December 2005.  The MDCC conducted another planning process in 2014, engaging researchers, clinicians, Federal agencies, patient advocacy groups and people with lived experience to renew the Action Plan, which was approved by the committee in November 2015 and published on the MDCC website (2015 MDCC AP).  The expert opinions in the plan have guided decision-making by researchers, clinicians, MDCC member organizations and others.  While significant progress has been made on the objectives described in the 2015 AP, there is still much work to be done to advance knowledge of the muscular dystrophies, develop and implement effective therapies and enhance strategies to improve the lives of affected individuals. In 2024, the MDCC established working groups of experts that developed documents recommending priorities to guide activities over the next ten years to advance muscular dystrophy research and improve access to care and services for affected individuals.  These working groups were organized around the topics of mechanisms of disease, preclinical translation, clinical studies and thriving with muscular dystrophy.  The working groups included researchers, clinicians, people with lived experience, and representatives of patient advocacy groups and Federal agencies.  The Co-Chairs of the groups presented their recommended priorities during the November 22, 2024 meeting of the MDCC (see video recording of the meeting).

Information Requested
Through this RFI, the MDCC invites input from people with lived experience, researchers in academia and industry, health care professionals, patient advocates and health advocacy organizations, scientific or professional organizations, Federal agencies, and other interested members of the public on the draft priorities for the 2025 renewal of the AP. Organizations are strongly encouraged to submit a single response that reflects the views of their organization and entire membership.  Responses to this RFI will be discussed with the MDCC and used to further strengthen and clarify the 2025 AP. 

How to Submit a ResponseTo access the draft priorities documents and submit your comments and suggestions please visit the MDCC 2025 AP renewal RFI website.

Responses to this RFI are voluntary. Do not include any proprietary, classified, confidential, trade secret, or sensitive information in your response. The responses will be reviewed by NIH staff and leadership. Individual feedback will not be provided to any respondent.  The MDCC will use the information submitted in response to this RFI at its discretion and will not provide comments to any respondent’s submission. Respondents are advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. The Government reserves the right to use any submitted information on public NIH websites, in reports, in any possible resultant solicitation(s), grant(s), or cooperative agreement(s), or in the development of future funding opportunity announcements.

This RFI is for information and planning purposes only and shall not be construed as a solicitation, grant, or cooperative agreement, or as an obligation on the part of the Federal Government, the NIH, or individual NIH Institutes and Centers to provide support for any ideas identified in response to it. The Government will not pay for the preparation of any information submitted or for the Government’s use of such information. No basis for claims against the U.S. Government shall arise as a result of a response to this request for information or from the Government’s use of such information.
 

Inquiries

Please direct all inquiries to:

Glen Nuckolls Ph.D.
MDCC Exec Sec
National Institute of Neurological Disorders and Stroke, NIH
301-496-5876
[email protected]