In late 2017, PPMD announced the formation of a Global Certified Duchenne Care Center (CDCC) Program, offering a path forward for global neuromuscular patient advocacy groups to certify Duchenne Care Centers within their own countries. Patient advocacy groups, operating within their own country and under the guidance of PPMD’s Certified Duchenne Care Center Program, grant certification to local Duchenne Care Centers that meet the high standards set forth by this program.
Last year, the World Duchenne Organization (WDO) expressed interest in assisting in the expansion of the PPMD Global Certified Duchenne Care Center Program, allowing this international program to have a much broader reach.
Our first joint venture is Motol Children’s Hospital in Prague, Czech Republic. After receiving the application from Motol’s, a site visit was organized that included members of both PPMD’s CDCC Certification Committee and WDO. This first joint visit was an effort to demonstrate to WDO the entire process of certification, from the pre-application, application, site visit, interviews, chart review, and certification committee review and to start to develop a process in which we could all participate together.
We are thrilled that Motol University Hospital will be the second Global Certified Duchenne Care Center. Together with the End Duchenne Czech Republic advocacy group, Jana Haberlova and the team at Motol University Hospital are doing an amazing job providing all of the elements of recommended care and are providing the best in resources and services to their Duchenne families.
PPMD and WDO are dedicated to improving the care of every single person living with Duchenne, everywhere.
PPMD has always felt that every single family, no matter where they live, deserves the best in Duchenne care and services. PPMD’s Certified Duchenne Care Center (CDCC) program has actively identified 26 centers across the US and that number continues to grow, with exciting additions like the recognition of adult-focused care.
After much discussion, there were two reasons why the CDCC Certification Committee and PPMD decided to develop a global program:
- Like we do here at home, we want to help families find the best Duchenne care for their children in their country. Using the Certified Duchenne Care Center Program, we have a vehicle that we can use to raise awareness of Standards of Care beyond the borders of the U.S., and to recognize those centers around the world that are providing that top level of care.
- Clinical trials are in need of participants, and, if care is standardized amongst these participants, the outcomes from that clinical trial are strengthened. By giving industry additional populations to draw from, we will be able to speed up trial recruitment, ensure participants are all receiving the same level of care, and reduce the time it takes to complete clinical trials.
When PPMD began to explore the possibility of extending CDCC certification beyond the US borders, our first step was the certification of Red Cross Hospital in Cape Town, South Africa. Red Cross Hospital was certified by the Muscular Dystrophy South Africa (a local advocacy organization) under the guidance of PPMD’s CDCC Certification Committee, because they provide exemplary care to the many Duchenne families in their area.
We can’t do it alone
We are thrilled that WDO joined PPMD in leading this international effort! Together will review applications for Global Certification and look forward to the announcement of future certified centers.
Good care starts at home
We continue to do everything we can to improve care in the world. With their leadership role on the Care Considerations steering committee, PPMD is guiding the development and update of Duchenne Standards of Care. Through the Certified Duchenne Care Center Program, we are identifying and certifying centers capable of providing care in agreement with those standards, then monitoring those centers to make sure that the care and services continue to be the very best. Through webinars, online resources, and regular Every Single One tour stops, we are doing everything we can to bring information to families around our country.
We are very excited to begin this new chapter of the CDCC program. We all know that Duchenne care is hard. We are doing our best to make it better, and easier, for every single family, everywhere.