DMD Newborn Screening Symposium Agenda
September 11-12, 2012
Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road, Bethesda, MD 20852
Symposium Chairs
Jerry R. Mendell, M.D.
Curran-Peters Chair in Pediatric Research Professor of Pediatrics and Neurology
and Director of Paul D. Wellstone Muscular Dystrophy Cooperative Research Center, The Ohio State University
Director of the Center for Gene Therapy, Nationwide Children's Hospital
Michele A. Lloyd-Puryear, M.D., Ph.D.
Senior Medical and Scientific Adviser
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NIH)
Schedule
| Tuesday, September 11, 2012 | ||||
| Reception | ||||
| 6:30-7 p.m | ||||
| Dinner and welcome | ||||
| 7 p.m. | R. Rodney Howell, M.D., FAAP, FACMG, University of Miami | |||
| Wednesday, September 12, 2012 | ||||
| Breakfast | ||||
| 8-8:30 a.m. | ||||
| Welcome and Goals for Meeting | ||||
| 8:30-8:45 a.m. | Sanjay Bidichandani, MBBS, Ph.D, Vice President — Research, MDA | |||
| Significance for the Addition of DMD to the Uniform Panel | ||||
| 8:45-9 a.m. | R. Rodney Howell, M.D., FAAP, FACMG, University of Miami | |||
| Evidence-Based Review: Description and summary of the SACHDNC process | ||||
| 9-9:30 a.m. | Alex Kemper, M.D., MPH, M.S., Duke University | |||
| Case Example: Adding SCID to the Uniform Panel | ||||
| 9:30 a.m.-10 a.m. | Amy Brower, Ph.D., American College of Medical Genetics | |||
| What Are We Screening? Description of DMD Disease Process | ||||
| 10-10:15 a.m. | Craig McDonald, M.D., University of California, Davis | |||
| Newborn Screening for DMD: Summary of NBS findings in Ohio | ||||
| 10:15-10:45 a.m. | Jerry Mendell, M.D., Nationwide Children’s Hospital and The Ohio State University | |||
| Break | ||||
| 10:45 a.m.-11 a.m. | ||||
| DMD Implementation of CK Screening: Possibilities and challenges for a state | ||||
| 10:45 a.m.-11 a.m. | Ram Chandrasekar, Ph.D., Ohio Department of Health | |||
| Treating DMD | ||||
| 11:15-11:30 a.m. |
Robert Weiss, Ph.D., University of Utah Madhuri Hegde, Ph.D., Emory University |
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| Lunch | ||||
| 12:15-1:30 p.m. | ||||
| Panel discussion | ||||
| 1:30-2:30 p.m. |
John Porter, Ph.D, NINDS (moderator) Michelle Caggana, Sc.D., New York State Department of Health Fred Lorey, Ph.D., California Department of Public Health Jeffrey Brosco, M.D., Ph.D., University of Miami Scott Grosse, Ph.D., Centers for Disease Control and Prevention |
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| Break | ||||
| 2:30-2:45 p.m. | ||||
| Public and Provider Education | ||||
| 2:45-3:45 p.m. |
Annie Kennedy, MDA (moderator) Pat Furlong, PPMD Robert Saul, M.D., Greenwood Genetic Center (and AAP) Bruce Korf, M.D., Ph.D., University of Alabama, Birmingham (and ACMG) Nicole Johnson, Sc.M., CGC, Johns Hopkins School of Medicine |
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| Discussion of Next Steps: Questions to be answered | ||||
| 3:45-5:00 p.m. |
Piero Rinaldo, M.D., Ph.D., Mayo Clinic Michele Lloyd-Puryear, M.D., Ph.D., NICHD |
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| Adjourn | ||||
| 5 p.m. | ||||
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