Certified Duchenne Care Center Program Duchenne Congress May 20, 2017 Kathi Kinnett, MSN, CNP SVP Clinical Care PPMD

CDC Care Guidelines One product of the MD CARE Act Established guidelines of Duchenne care Published in Lancet 2010 No methodology around evaluating the implementation or impact of these guidelines

Background of TDCI Transforming Duchenne Care Meeting Summer 2012 53 people,17 institutions, advocacy, industry, parents Met to address discrepancies in Duchenne care

Background of TDCI TDCI was formed to address these 4 themes 4 key themes emerged: Discrepancies in Care Discrepancies in models of Clinical Care Discrepancies in implementation of standards of care (Care Considerations) Impact both care and clinical trials TDCI was formed to address these 4 themes

Certified Duchenne Care Center Program Creates a network that will: Provide care in alignment with the Standards of the Certified Duchenne Care Center Program which are in agreement with the CDC Care Considerations

Why is Certification Important? Establishes certification based upon: Standards for Certification Care Considerations Identifying sites providing care in agreement with the Care Considerations Goals Improve patient access to optimal comprehensive care reduce variation in clinical trial outcomes

Comprehensive Approach to Optimizing Care Application surveys, site visit, chart reviews, decision of CDCCP Certification Committee - Recommendations given - Certification (5 years) - Tentative certification (1 year) - Annual review (all centers) Results reported Back to the center Parent /patient report: DuchenneConnect And Clinical Experiences Survey Annual follow up on committee suggestions Results publically available on PPMD website

Seattle Children’s Hospital Massachusetts General Hospital Lurie Children’s Hospital Yale New Haven Children’s Hospital Kennedy Krieger Institute Nationwide Children’s Hospital UC Davis University of Iowa Children’s Hospital Stanford Children’s Hospital Children’s Hospital Colorado Cincinnati Children’s Hospital Children’s Mercy Hospital UCLA Duke University Medical Center Children’s Hospital L.A.

Global Certification Process Complete pre-application Applicant institution vetted by UPPMD Advocacy organization vetted by UPPMD Application opened 2 country representatives identified CDCC certification committee will guide process Certification by advocacy organization in the applying country

Thank you!