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Making Duchenne Care and Clinical Trials Better – Globally

An email from a mom in war-torn Baghdad who doesn’t know how to even start to seek care for her son with a new diagnosis.

A mom in India who can’t find a provider who will give her son steroids, but instead say stem cells will cure him.

A physical therapy student in Turkey who wants to learn all she can to help the Duchenne families in her country.

An uncle in China who thinks that coming to the U.S. will cure his young nephew. 

 

These are just a few of the heart wrenching stories that we get from parents and providers overseas who – like all of us – are searching for ways to make the care for the people that they love, better.   

 

PPMD is proud to announce 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.

 

PPMD is dedicated to improving the care of every single person living with Duchenne, everywhere.

To that end, we are offering an opportunity for centers around the world, to learn what comprehensive care and services for Duchenne includes, demonstrate that they are capable of providing that level of care and services and, if it is decided that they meet our robust requirements, to become certified as a Global Duchenne Care Center.

 

After much discussion, there were two reasons why the CDCC Certification Committee and PPMD decided to develop this program:

 

  1. 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. 

  2. 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.

 

The CDCC Certification Committee is working with the Muscular Dystrophy Foundation of South Africa to review the Red Cross Hospital in Cape Town.

 

We are very excited to begin this new chapter of the CDCCC 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.

 

Good care starts at home.

PPMD continues to do everything we can to improve care in the U.S. With our leadership role on the Care Considerations steering committee, we are 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.

 

The process of Global Certification:

The process of centers outside the U.S. becoming certified is slightly different than the certification of centers inside the U.S.  First, a global center must complete a pre-application for certification through the U.S. application portal.  If the certification committee accepts the pre-application, we then look to the applying country and identify an appropriate local advocacy group, who will actually be the “certifying body.” 

 

The local advocacy group will nominate 2-3 experts in Duchenne care from their country who will temporarily sit on the certification committee during the review of the center from their country.  The local experts will manage the site visits, chart review and interviews, and will develop the site review summary. 

 

The complete certification committee (which includes both the U.S. and the local members) then reviews the site review summary.  If concerns or questions arise, the local experts take them to the applying center. Once everyone is satisfied that the requirements for certification have been met, the local advocacy organization will grant the global certification and assume the responsibility of checking that the center continues to meet the certification requirements. Like our current certification program in the U.S., global certification is also for 5 years.

 

We look forward to bringing you more announcements of certification in the U.S. in the New Year and are excited to announce our first global certification soon!

 

Related links

Certified Duchenne Care Center Locations

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