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 5. Strategic Plans

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MUSCULAR DYSTROPHY COORDINATING COMMITTEE (MDCC)

On this page
 * Overview
 * MDCC Action Plan
 * Strategies to Promote Diversity in Muscular Dystrophy Research Participation
 * Funding Opportunities
 * Meetings
 * Membership


OVERVIEW

NINDS is a member of the Muscular Dystrophy Coordinating Committee (MDCC), a
Federal Advisory Committee including NIH institutes, other Federal agencies, and
patient advocates. The MDCC identifies the many challenges confronting people
with muscular dystrophy and their families and coordinates efforts to address
them. (View the MDCC Charter(pdf, 160 KB).) In 2005, the MDCC collected and
integrated the recommendations of muscular dystrophy researchers, physicians,
patients, family members, and other stakeholders into the Action Plan for the
Muscular Dystrophies. The Action Plan(pdf, 690 KB) was revised and updated in
2015, and outlines priority needs to improve treatments and reduce disease
burden for all forms of muscular dystrophy. This plan is meant to serve as a
blueprint for research across the entire muscular dystrophy community.


MDCC ACTION PLAN

 
MDCC Action Plan

While the Action Plan includes some objectives for specific types of muscular
dystrophies, most objectives address shared needs of the field as a whole. The
2015 MDCC Action Plan for the Muscular Dystrophies has added value in that it
can serve as both a starting point and a guide for individual disease
communities to tailor strategic plans for their specific types of muscular
dystrophy.

Read the Action Plan(pdf, 690 KB)
Additional Action Plan Resources
 * 2015 MDCC Action Plan Highlights(pdf, 164 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


PREVIOUS MDCC PLANNING EFFORTS

The MD-CARE Act of 2001 directed the MDCC to develop a plan for conducting and
supporting research and education on muscular dystrophy through the national
research institutes, and to submit this plan to Congress within the first year
of the establishment of the MDCC. This first planning stage led to the Muscular
Dystrophy Research and Education Plan for NIH, which was submitted to Congress
in August 2004 which formed the basis for a subsequent, more intensive planning
process that produced the 2005 MDCC Action Plan for the Muscular
Dystrophies(pdf, 625 KB), which was approved by the MDCC in December 2005. The
next stage in planning is described in the 2015 MDCC Action Plan for the
Muscular Dystrophies, above.


STRATEGIES TO PROMOTE DIVERSITY IN MUSCULAR DYSTROPHY RESEARCH PARTICIPATION

While the prevalence of muscular dystrophies may vary by gender, 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 underrepresented people living with
muscular dystrophies.


STRATEGIES TO OVERCOME OBSTACLES

Expand accordion content


GENERAL

 * Broaden the eligibility criteria as appropriate so as not to exclude
   potential participants for reasons that are unlikely to affect the outcomes
   of the study.
 * Minimize the burden of participating in the study by reducing the frequency
   and/or duration of clinic visits and overall time required.
 * Allow for clinic visits in evenings or during weekends.
 * Conduct periodic evaluation of recruitment and retention strategies.


GEOGRAPHIC

 * Select study sites with ample numbers and diversity of potential study
   participants.
 * 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 underrepresented people to
   increase awareness of the study and to incorporate patient perspectives in
   the design of the study.


 

Additional Guidance
 * Food and Drug Administration Guidance for Industry
 * Publication: “Integrating Research into Community Practice— Toward Increased
   Diversity in Clinical Trials(link is external)”, Woodcock et al., NEJM 2021
 * Food and Drug Administration website on Clinical Trial Diversity
 * NIH website on Inclusion of Women and Minorities as Participants in Research
   Involving Human Subjects
 * NIH video guidance for applicants “Including Diverse Populations in NIH
   funded Clinical Research(link is external)”


FUNDING OPPORTUNITIES


ACTIVE

Clinical Trial Readiness for Rare Neurological and Neuromuscular Diseases (U01
Clinical Trial Not Allowed) - PAR-22-184


INACTIVE

Clinical Trial Readiness for Rare Neurological and Neuromuscular Diseases (U01)
- PAR-18-534

Field Initiated Projects Program (Development) - HHS-2020-ACL-NIDILRR-IFDV-0374

Advanced Rehabilitation Research Training (ARRT) grant -
HHS-2018-ACL-NIDILRR-ARCP-0240

Advanced Rehabilitation Research Training (ARRT) Program - Community Living and
Participation Department of Health and Human Services Administration for
Community Living - HHS-2020-ACL-NIDILRR-ARCP-0368

Advanced Rehabilitation Research Training (ARRT) Program - Health and Function
Department of Health and Human Services Administration for Community Living -
HHS-2020-ACL-NIDILRR-ARHF-0369

2020 Request for Applications (RFA): International Research Grants in Congenital
Muscular Dystrophy(link is external)

2020 Request for Applications (RFA): International Research Grants in Congenital
Muscular Dystrophy: Collagen VI(link is external)

2020 Request for Applications (RFA): International Research Grants in Congenital
Muscular Dystrophy: LAMA2(link is external)

2020 Request for Applications (RFA): International Research Grants in Congenital
Muscular Dystrophy: SELENON(link is external)

2020 Request for Applications (RFA): International Research Grants in Congenital
Muscular Dystrophy: αDG(link is external)


MEETINGS

Upcoming Meeting | November 22, 2024

Details TBA

Recent Meeting |March 18, 2024

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

MDCC Past Meetings and Recordings

View previous meetings

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
Bethesda, Maryland

Diana Bianchi M.D.
Federal Agency Representative
Director, Eunice Kennedy Shriver National Institute of Child Health and Human
Development (NICHD), National Institute of Health
Bethesda, Maryland

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

Eugene Freund, M.D., MSPH, CAPT USPHS
Federal Agency Representative
Medical Officer, Centers for Medicare and Medicaid Services
Washington, District of Columbia

Emily R. Freilich, M.D.
Federal Agency Representative
Medical Officer
Office of Neuroscience
Center for Drug Evaluation and Research
U.S. Food and Drug Administration
Silver Spring, Maryland

James P. Kiley, Ph.D.
Federal Agency Representative
Director, Division of Lung Diseases, National Heart, Lung and Blood Institute
(NHLBI), National Institutes of Health
Bethesda, Maryland

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

Jennifer Levy, Ph.D.
Public Member, Pending appointment by HHS Secretary
Scientific Director, Coalition to Cure Calpain 3
New York, New York

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

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

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

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

M. Theresa B. San Agustin, M.D.
Federal Agency Representative
Program Manager, National Institute on Disability, Independent Living and
Rehabilitation Research, Administration for Community Living
Washington, D.C.

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
Atlanta, Georgia

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

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

Denise Myler
Public Member, Pending appointment by HHS Secretary
Idaho Caregivers Alliance
Ammon, Idaho

Radha Holavanahalli, Ph.D.
Public Member, Pending appointment by HHS Secretary
Program Specialist
National Institute on Disability, Independent Living, and Rehabilitation
Research (NIDILRR)
Washington, D.C.

 

Related Topics

Muscular Dystrophy Disorder Information

Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers
(MDCRCs)

Duchenne Muscular Dystrophy Research Program (DMDRP)(link is external)


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