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Certified Duchenne Care Center Program

Currently, there are more than 10-12,000 young people diagnosed and living with Duchenne muscular dystrophy (Duchenne) in the United States. People living with Duchenne, and their families, deserve the best care and treatments possible 

PPMD, with the help of many experts, has developed a methodology and process by which to provide information to patients/families, and to certify centers delivering comprehensive Duchenne care – the “Certified Duchenne Care Center Program."

PPMD’s Transforming Duchenne Care Initiative (TDCI)

In 2012, PPMD set out to define Duchenne comprehensive care and services. With the help of 17 institutions, parents, and representatives from advocacy and legislation, PPMD held the first Transforming Duchenne Care Initiative (TDCI) meeting.  Attendees discussed components of comprehensive care, discrepancies in care and services, and ways to reduce those discrepancies.

Patient and families at the TDCI meeting, stated that important information for them included:

  • What care and services constitute comprehensive Duchenne care?
  • Which centers are capable of delivering comprehensive care?
  • Who are the members of the care teams are at the centers?
  • Which centers are conducing clinical trials?

Patients, parents, providers and industry, also know that providing standardized care to patients in clinical trials, helps to reduce variability in the outcomes of those trials.  

Certified Duchenne Care Center Program (CDCCP)

The Certified Duchenne Care Center Program (CDCCP) is the natural evolution of the TDCI. The goal of the CDCCP is to make comprehensive care, in agreement with the CDC Care Considerations, available and accessible to as many patients/families as possible. A unique program of PPMD, the CDCCP aims to standardize and improve care through the evaluation and certification of a network of centers capable of providing comprehensive care and services to people living with Duchenne muscular dystrophy.

The goals of the CDCCP include:

  • Utilize the CDCCP Standards, which are in agreement with the CDC Care Considerations, to evaluate care and clinical services provided to people living with Duchenne and cared for by centers applying for certification.
  • Optimize and standardize care and clinical services for people living with Duchenne muscular dystrophy, who are cared for by Certified Duchenne Care Centers.
  • Certify centers capable of providing comprehensive care and clinical services to patients living with Duchenne across the US and internationally.
  • Publicly communicate to the Duchenne community which centers are certified as Duchenne Care Centers.
  • Publish data collected from certified centers demonstrating the care and services provided, as well as continued efforts to improve care and services.
  • Encourage/enable parents and patients seen for care in Certified Duchenne Care Centers, complete the Clinical Experiences Survey, and to participate in DuchenneConnect, a robust and cutting-edge registry and website, the purpose of which is:
    • To collect patient reported outcomes.
    • To connect people living with Duchenne, with actively recruiting clinical trials and research studies.
    • To educate people and families about Duchenne research.
  • To provide guidance to those centers who are engaged and committed, but do not yet meet the criteria for certification, to reach the level of optimal care necessary for certification.

Requirements for Certification

Requirements for certification include the provision of standardized comprehensive clinical services and care. These requirements are in agreement with recommendations made by the DMD Care Considerations Working Group (DMDWG), which published the Centers for Disease Control and Prevention (CDC) Care Considerations, standards of Duchenne care which were made available in 2009 and published in 2010 and the Certified Duchenne Care Center Program’s Standards. All Certified Duchenne Care Centers have met the requirements for, and agree to provide, standardized comprehensive clinical care and services (download the CDCC Program Requirements for Care and Services).

The CDCCP strives to:

Improve Patient Care

The care required by Certified Duchenne Care Centers is in agreement with the CDC Care Considerations and is defined in the Certified Duchenne Care Centers Program's Standards Document. The care required by Certified Duchenne Care Centers will serve as a model for other clinics/providers who are interested in improving the care provided by their programs. 

Patients and parents are asked to annually complete Clinical Experiences Surveys. Discrepancies between the patient/parent reported Clinical Experiences Surveys will be shared with the centers so that improvements can continue to be achieved. 

Improve Clinical Trials

Many of the Certified Duchenne Care Centers are also clinical trial sites. Providing standardized comprehensive care and services to patients seen at these centers will reduce variability of results in the clinical trials performed at these centers, thus enhancing the accuracy and strengthening the of the clinical trial results. 

Improve Patient Recruitment of Clinical Trials

DuchenneConnect is a PPMD supported patient reported outcomes registry. It is a powerful tool that can be used to identify unmet needs, important patient outcomes and patients who may be appropriate for clinical trials. Increasing enrollment in DuchenneConnect will allow industry to more quickly identify patients who may be appropriate for clinical trial and shorten the time needed for patient enrollment.

Certified Duchenne Care Centers

 

To learn more about PPMD’s Certified Duchenne Care Center Program, please contact Kathi Kinnett at Kathi@ParentProjectMD.org.

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