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

3. 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

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

5. 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

7. 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

8. 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

9. 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

10. 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.

11. 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

12. Thank you!