Muscular Dystrophy Coordinating Committee (MDCC)

Overview

The Muscular Dystrophy Coordinating Committee (MDCC) is a Federal Advisory Committee composed of representatives from the Federal Agencies and private organizations listed below. The MDCC meets twice a year to discuss gaps and opportunities for muscular dystrophy research and other strategies to improve the lives of affected individuals. The MDCC also developed and periodically updates and publicizes the Action Plan for the Muscular Dystrophies (see below), which is a plan for advancing research and promoting access to quality care and services. The Action Plan includes recommendations from a broad range of experts including muscular dystrophy researchers, clinicians, patients and other people with lived experience, advocacy groups and Federal agency representatives.

MDCC Member Organizations

Federal Agencies

National Institutes of Health

National Institute of Neurological Disorders and Stroke (NINDS)
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Heart, Lung, and Blood Institute (NHLBI)

Centers for Disease Control and Prevention (CDC)

Centers for Medicare and Medicaid Services (CMS)

Congressionally Directed Medical Research Programs (CDMRP)

Department of Education

Food and Drug Administration (FDA)

Health Resources and Services Administration (HRSA)

National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR)

Social Security Administration (SSA)

Patient Advocacy Groups

CureCMD

FSHD Society

Myotonic Dystrophy Foundation

MDCC Action Plan

The MDCC is requesting public comments on the draft priorities recommended by working groups of experts for the 2025 renewal of the Action Plan for the Muscular Dystrophies . Please review the draft priorities for the MDCC Action Plan renewal and submit your comments and additional ideas.

Additional Action Plan Resources

2015-action-plan-highlights_508c.pdf (160.11 KB)
NIH Press Resease on MDCC Action Plan: Publication highlights release of muscular dystrophy action plan
PubMed: The muscular dystrophy coordinating committee action plan for the muscular dystrophies

Strategies to Promote Representative Participation in Muscular Dystrophy Research Projects

While the prevalence of muscular dystrophies may vary by sex, race and ethnicity, researchers should design studies to ensure that research findings are applicable to all people affected by the condition being studied. Here we provide guidance on strategies and resources to reduce obstacles to research participation and encourage outreach to all people living with muscular dystrophies.

Geographic

Select study sites with ample numbers potential study participants representative of the overall population of affected individuals.
Select study sites that minimize the travel of study participants.
Provide support for study participant transportation, accommodations and parking as needed.
Integrate remote data collection such as smartphone apps or wearables into the study design while also taking into consideration the need for access to broadband communication networks in rural areas.

Socioeconomic

Have validated translations of consent forms and other relevant study documents available in languages that help ensure achievement of the planned enrollment.
Include study personnel who are bilingual and culturally sensitive to the planned enrollment population. Consider enlisting the help of community ambassadors to build trust in the communities of potential study participants.
Provide daycare for family members during study visits.
Establish recruitment, enrollment and/or data collection sites in the community at locations that are convenient, familiar and trusted by potential study participants.
Work with patient advocacy groups in outreach to affected individuals to increase awareness of the study and to incorporate patient perspectives in the design of the study.

Additional Guidance

Publication: “ Integrating Research into Community Practice— Toward Increased Diversity in Clinical Trials ”, Woodcock et al., NEJM 2021
NIH website on Inclusion of Women and Minorities as Participants in Research Involving Human Subjects

Meetings

Upcoming Meeting |October 31, 2025

12:00 PM - 4:00 PM ET
Virtual Only
Watch Videocast

MDCC Past Meetings and Recordings

View previous meetings

Prior Meeting Topics

View MDCC Meetings on NIH Videocast on-demand

Membership

Lindsey A. Criswell, M.D., M.P.H., D.Sc.
Chair, MDCC; Federal Agency Representative
Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health (NIH)
Bethesda, Maryland

Alison N. Cernich, Ph.D., ABPP-Cn
Federal Agency Representative, Pending appointment by HHS Secretary
Acting Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National institutes of Health (NIH)
Bethesda, Maryland

Gustavo Dziewczapolski, Ph.D.
Public Member
Scientific Director, CureCMD
San Diego, California

Michael J. Goldstein
Federal Agency Representative
Director, Office of Medical Policy
Social Security Administration (SSA)
Baltimore, Maryland

Radha Holavanahalli, Ph.D.
Federal Agency Representative, Pending appointment by HHS Secretary
Project Officer
National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR)
Administration for community Living (ACL)
Washington, DC

Alisha Keehn, MPA
Federal Agency Representative
Genetic Services Branch Chief
Health Resources and Services Administration (HRSA)
Rockville, Maryland

Walter Koroshetz, M.D.
Federal Agency Representative
Director, National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health (NIH)
Bethesda, Maryland

Yolanda Lusane, Ph.D., PT, CAPM
Federal Agency Representative
Education Program Specialist
Office of Special Education and Rehabilitative Services
U.S. Department of Education
Washington, DC

Ami K. Mankodi, M.C., FAAN
Federal Agency Representative, Pending appointment by HHS Secretary
Lead Physician
Center for Drug Evaluation and Research
Office of New Drugs, Office of Neuroscience, Division of Neurology 1
U.S. Food and Drug Administration (FDA)
Silver Spring, Maryland

Marielena McGuire, Ph.D.
Federal Agency Representative
Health Science Program Manager
Congressionally Directed Medical Research Program
United States Army Medical Research and Materiel Command
Department of Defense
Fort Detrick, Maryland

Daniel Paul Perez
Public Member
Co-Founder, FSHD Society
Randolph, Massachusetts

Natalie Street, M.S.
Federal Agency Representative
Health Scientist
Division of Human Development and Disability
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention (CDC)
Atlanta, Georgia

Eric T. Wang, Ph.D.
Public Member
Strategic Planning Steering Committee, Myotonic Dystrophy Foundation
Associate Professor, Department of Molecular Genetics & Microbiology, University of Florida
Gainesville, Florida

Glen H. Nuckolls, Ph.D.
Executive Secretary, MDCC
Program Director
Division of Neuroscience
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health (NIH)
Bethesda, Maryland