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

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.

Meetings

Membership