Muscular Dystrophy Coordinating Committee Meeting | Muscular Dystrophy Coordinating Committee

Monday, December 20, 2021

Virtual | 1pm - 5pm EST

Meeting Agenda - 12/20/2021
Time	Presentation
1:00 – 1:10	Introductions and general information Glen Nuckolls, National Institute of Neurological Disorders and Stroke (NINDS/NIH), MDCC Designated Federal Official
1:10 – 1:30	Chair Presentation Diana Bianchi, Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD/NIH), MDCC Chair
1:30 – 2:15	New Member Presentations Debra Miller, Founder and CEO, CureDuchenne Michael J. Goldstein, Director, Office of Medical Policy, Social Security Administration Alisha Keehn, Branch Chief, Genetic Services Branch, Health Resources and Services Administration (HRSA)
2:15-2:30	Update on Medicare Coverage for BiPAP Eugene Freund, Centers for Medicare and Medicaid Services
2:30-2:45	Break
2:45 – 4:15	“Strategies to Increase Inclusion of Racial and Ethnic Minorities in Research Studies” Session Introduction Glen Nuckolls, NINDS Heather Watkins, Disability Advocate An FDA Perspective: Advancing Racial and Ethnic Minority Participation in Clinical Trials RADM Richardae Araojo, U.S. Food and Drug Administration Prevalence and Disparities in Muscular Dystrophies Natalie Street, Centers for Disease Control and Prevention Community Engagement in Translational Research: Our Experience in Puerto Rico Studying Pediatric Rare Lung Diseases” Wilfredo De Jesus Rojas, University of Puerto Rico – Medical Science Campus
4:15 - 4:55	Panel Discussion of Diversity in Research Studies Session Presenters Joanne Donovan, Edgewise Therapeutics Mathula Thangarajh, Virginia Commonwealth University
4:55	Closing Remarks Diana Bianchi, NICHD