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PPMD's Certified Duchenne Care Center Program – 2017 Impact & Progress

PPMD's Certified Duchenne Care Center (CDCC) Program was developed to make comprehensive Duchenne care and services, provided in agreement with the CDC Care Considerations, available and accessible to as many families as possible, and to strengthen clinical trial results by decreasing variability in care among clinical trial subjects.

The CDCC network has now grown to 18 incredible centers across the United States, includes more than 400 medical providers and serves more than 2,550 patients and their families. These 18 centers are sites to 39 clinical trials, enrolling more than 1,140 patients, who are either currently enrolled or in active recruitment (these are averages based the number of subjects and the number of sites for each trial). 

There have been unanticipated results as well as an increase in accessibility and availability of optimal, comprehensive, Duchenne care.

  • By allowing neuromuscular patients of all diagnoses access to the comprehensive teams of sub-specialists serving the Duchenne population, these centers have improved the care of all patients, with a variety of neuromuscular diagnoses, seen in the CDCCs. In this way, PPMD's program has impacted the lives of thousands more families with dozens more diagnoses.

  • Certified Duchenne Care Centers have become regional experts, available for medical providers and hospitals in their areas that may not have expertise in Duchenne, as well as local hospitals and medical providers who see their patients closer to their homes.

  • CDCC providers have identified gaps in care and research that have led to PPMD meetings in the areas of osteoporosis and bone health, acute cardiac events, pulmonary outcomes, and the unique burdens that pediatric patients and families endure during clinical trials.

  • CDCC directors have banned together, out of the sheer willingness to help their Duchenne families avoid the frustrating experience of accessing newly approved therapies. The dedication that these amazing individuals have for our community is appreciated.

 

Bi-Annual Report of Each Center

The Monitoring Process

The CDCC is monitored by the CDCC Certification Committee – a steering committee of 11 individuals who represent several areas of neuromuscular subspecialty care, parents, industry and PPMD – review each application and site visit summary, and make suggestions/recommendations regarding certification. If center issues arise, this committee gathers to discuss the issue and potential solutions, and to discuss these solutions with the center. It is then the responsibility of the committee to follow up on the solution, to make sure that that recommendations are followed and that the issue is resolved. 

 

PPMD works to certify centers, rather than medical providers, knowing that it is the team that is best at providing comprehensive, multidisciplinary care, rather than the practice of a single provider. If a key individual of the team leaves the center, it is the responsibility of the center director  and the subspecialty department, to develop a contingency plan, allowing for consistent care during the period of transition, and to let both the families seen at that center and PPMD know about next steps.


It is also the responsibility of the director to ensure that both the interim and new providers are brought up to speed with regards to the standards of Duchenne care in that sub-specialty area, across the lifespan of Duchenne, so that the standard of care continues to be available to families, no matter the circumstance.

Global Certification

 

In addition to our US CDCC Program, PPMD is proud to announce the new formation of a Global Certified Duchenne Care Center 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.

 

Your Input is Vital

The Clinical Experiences surveys that we ask you to complete each year, let the CDCC Certification Committee know what elements of care and what services you are receiving, and what you like and what you do not like about the care and services at your center. We put all of your responses together each year and give those back to the centers.


The Certification Committee takes a deeper dive into any issues or concerns that are raised, and the centers use your feedback to continuously improve the care and services that you are receiving at your center. Your completing the Clinical Experiences Survey annually is vital to the continuous improvement of the centers and our program.

(NOTE: Because we strive to keep our surveys easy and clear, we have updated our Clinical Experiences survey to do just that! Please let us know if you have other suggestions that will help us to gather this important information.)

 

PPMD Is Dedicated to Improving the Care of Every Single Person Living with Duchenne

In addition to the expertise offered by the expert clinicians at our CDCCs, PPMD is available to offer medical guidance when needed, referral and connection to appropriate medical personal and genetic counseling to patients, parents and providers. We are available when you need us and will do our very best to make sure that you get the information and assistance that you need.

 

PPMD is extremely proud of what the CDCC Program has been able to accomplish in three years, but we have not done it alone. With the help of compassionate and dedicated clinicians and families, we have initiated a program that we hope will work to provide everything that our Duchenne community will need for decades to come. 

 

Reminders for Parents in Emergency Situations


If you are headed to the emergency room or the hospital, please remember:

  • Take the PPMD emergency card with you (available in English or Spanish) 
  • Take a copy of the summary of your last neuromuscular visit with you or a brief one page summary of your/your child’s care
  • Download, and keep handy, the PPMD mobile app
  • Take any equipment that you use at home (cough assist, BiPAP, etc.) and medications that you take, with you
  • Keep the information regarding oxygen use and appropriate anesthesia available for you and the emergency room staff
  • Call your neuromuscular team and let them know what is happening
  • Be sure that your neuromuscular team is talking with the emergency staff and are guiding your care
  • If you/your child has developed an “emergency care plan,” take that as well
  • If you need assistance, call the PPMD office at 800-714-5437. If the office is closed, Kathi Kinnett is available at kathi@parentprojectmd.org or 513-260-4004.

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