For 25 years, care has been at the heart of PPMD’s mission to end Duchenne. Fast forward to today, the Certified Duchenne Care Center (CDCC) Program has identified more than 28 neuromuscular centers that are providing Duchenne care and services, from early childhood through adulthood, in agreement with the CDC Care Considerations for Duchenne.
We hope that the Care Section of PPMD’s website will be your go-to resource with any questions you may have. The PPMD team has consulted experts and compiled critical information to arm you with the tools you need to receive optimal care. Whether you are the person living with Duchenne, a care provider, a Duchenne carrier, or a clinician, explore the effects of Duchenne by area and the progression of the disease by age and stage.
Since 2012, our care program has been led by Kathi Kinnett. Kathi came to PPMD after years of experience at Cincinnati Children’s Hospital’s neuromuscular center. With the goal of giving as many patients as possible access to comprehensive Duchenne care and services, she developed the Certified Duchenne Care Center (CDCC) Program. In addition, she worked closely with the community to address medical issues in real time, to be responsive to needs for education and resources, and convened meetings and workshops to address numerous gaps in knowledge, care and research. As many of you know, Kathi is transitioning from full-time SVP of Clinical Care. As the Clinical Team Advisor, she will continue to work with the Care Team, providing guidance and education to our Duchenne community.
We are thrilled to announce that joining our care team as our new SVP of Clinical Care is Rachel Schrader. Rachel joins us from Nationwide Children’s Hospital and comes to PPMD with a wealth of Duchenne experience that includes several years as a pediatric nurse practitioner providing comprehensive neuromuscular care, coordination of a large CDCC, and clinical guidance and oversight of clinical trials as a research nurse practitioner. We are thrilled that she has chosen to share her expertise with the PPMD community and look forward to all that she will bring to the continued evolution of not just our CDCC program, but all PPMD programs.
Heading up community care education efforts, including PPMD’s End Duchenne Tour and assisting with the CDCC program is Amanda Wilkison. Amanda is a RN who has been a full-time member of the PPMD for over two years. She came to us with pediatric bedside nursing experience and loves working with providers and families to improve resources and education around Duchenne Care.
Also integral to the team are Jody Gabbard and Liz Habeeb-Louks. Jody organizes our growing annual PPMD Healthcare Professional Summit, as well as any and all care meetings that happen throughout the year. Liz is the webmaster of the team, managing all applications, annual reviews and re-applications for the CDCC Program. They both work tirelessly to keep the team organized and on schedule.
This extraordinary team is already outlining an exciting 2020, which will include:
- Continued certifications of pediatric, adult, and global CDCCs
- Updated “Education Matters” and “Learning and Behavior”
- The 2020 Healthcare Professionals Summit
- A meeting assessing the gaps in knowledge, care, and research around the brain (cognition, learning and behavior)
- A meeting to discuss gaps in knowledge, care, and research around gastrointestinal system (GI – also known as the digestive system), nutrition, and obesity
- Beginning discussions around genitourinary (GU) health (or the reproductive organs and the urinary system health) – screening, evaluation, and management
- 2020 Educational Events
- PPMD’s Annual Conference is an amazing opportunity to learn more about Duchenne standards of care through main session presentations, as well as age-appropriate breakouts lead by leading Duchenne specialists.
- PPMD’s End Duchenne Tour includes smaller-scale educational conferences hosted across the country to provide families with updates around Duchenne care, advocacy, and research.
Adult Certified Duchenne Care Centers
While the CDCC Program was first developed to standardize Duchenne pediatric care in the US, the program has evolved. The updated 2018 CDC Care Considerations gave recommendations for lifelong care, leading to the development and certification of our Adult CDCC program. We were excited to certify our first Adult CDCC just this month!
PPMD has hosted several meetings of Duchenne specialists from our CDCC network to address gaps in both care and research. Each of these meetings has resulted in a summary and a publication. These include:
- Contemporary Cardiac Issues in Duchenne Muscular Dystrophy
- Pulmonary Endpoints in Duchenne Muscular Dystrophy. A Workshop Summary
- Morbidity du to Osteoporosis in DMD: the Path Forward
- Progression of Duchenne Cardiomyopathy Presenting with Chest Pain and Troponin Elevation
- PPMD convened a meeting around contractures in Duchenne with NHLBI and the Shirley Ryan Abilities Lab. A publication that has been submitted and reviewed, and will be published shortly
Global Certified Duchenne Care Centers
PPMD also recognizes that every patient and family, no matter where you live on the globe, deserves the best Duchenne care. PPMD has partnered with World Duchenne Organization (WDO) to develop a process to certify Global CDCCs. Soon we will be announcing our first European certification with WDO. This center will join Red Cross Hospital in Cape Town, South Africa as the second Global CDCC. Stay tuned!
Translating Care: Introducing Spanish Materials
We understand language barriers often result in misinterpretation of communication concerning healthcare and research. In order to educate and inform Spanish-speaking members of our community, PPMD translated a collection of Spanish materials and resources, including Spanish emergency information cards, imperatives for Duchenne MD for healthcare providers and the PJ Nicholoff Steroid Protocol. PPMD also created an End Duchenne Tour: Spanish Remote Series, which includes a series of pre-recorded presentations about research, care, and school resources, followed by a live webinar to give families and providers the opportunity to ask questions of our Spanish speaking Duchenne experts.
Knowledge is Power
The Care Team is incredibly responsive to the needs of the Duchenne community, and has developed resources as needs arise, including:
- A revised Duchenne Timeline video
- AAP Tool for Parents (Physical Developmental Delays: What to Look For)
- Imperatives for Duchenne MD for Healthcare Providers
- Adult Imperatives for Duchenne MD for Healthcare Providers
- The PJ Nicholoff Steroid Protocol
- Updated anesthesia recommendations
- Updated vaccination requirements and annual flu prevention
- A 4 part series describing lifelong cardiac care
- A 4 part series describing lifelong pulmonary care
- Quickdraw Pulmonary Awareness series
- Webinar: Puberty in Duchenne
- Webinar: Orthopedic Complications in Duchenne
- PT Pearls for Parents: “Head, Shoulders, Knees, and Toes”
- Sample letters of medical necessity
- Published statement from the CDCC directors advocating for access to approved therapies
- Updated Emergency Information Wallet Card
- Development of the Emergency Information Large Weatherproof Card for backpacks, scooters, strollers, wheelchairs, and other mobility devices
- PPMD Emergency Mobile App
As a result of the Contractures in Duchenne Muscular Dystrophy and Other Neuromuscular Conditions meeting, new resources are forthcoming for both parents and providers. These will include a new PT handout and a series of stretching videos for both ambulatory and non-ambulatory patients.
We will continue to identify and address gaps in care, developing meetings, webinars, resources, and materials as needed. We know that a Duchenne diagnosis is overwhelming – and it doesn’t get any easier with time. Let PPMD be your guide on this complicated and emotional journey.
CONTACT THE CARE TEAM