Parent Project Muscular Dystrophy Continues Grant Supporting Clinic Liaisons for Acclaimed Certified Duchenne Care Center Program
HACKENSACK, N.J., Sept. 25, 2017 /PRNewswire-USNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), today announced that it will continue a grant program to help support the organization's highly regarded Certified Duchenne Care Center (CDCC) Program. The CDCC Program is a network of certified centers across the country that offers standardized comprehensive care and clinical services to people and families living with Duchenne. This grant will enable PPMD to continue to provide additional resources to improve patient care and patient recruitment for clinical trials through the centers.
"PPMD is extraordinarily proud of our Certified Duchenne Care Center Program, started in 2014, that recognizes outstanding centers capable of providing comprehensive care and services to people and families living with Duchenne in agreement with the Centers for Disease Control and Prevention's care guidelines," said Pat Furlong, PPMD's Founding President and CEO. "This continuation grant will allow us to continue our research liaison program, a program that has successfully increased enrollment in DuchenneConnect (PPMD's patient reported outcomes registry) and integrated clinical trial awareness into patient visits. In addition, this grant has given rise to young adult/transition seminars, family support groups, the integration of Child Life into patient visits, enhanced electronic medical records to include real time physical therapy data, and many other institutional projects. It is one thing for PPMD to certify these outstanding clinics, but we also have the responsibility to ensure that they can maintain their high standard of care. This grant will help support the compassion and care that these dedicated centers expertly provide to our patients and families. "
Highly regarded in the Duchenne community, the CDCC Program has created a network of centers across the United States capable of providing increased access to comprehensive care and services to patients and families living with Duchenne. PPMD's CDCC Program recently announced its 17th Certified Duchenne Care Center, with plans to certify additional centers throughout 2018.
The program includes more than 400 medical providers, serving over 3,000 patients, and active involvement in 44 clinical trials that account for over 850 patients within the CDCC network enrolled. Plans are also underway to start providing tools to implement the certification of centers internationally by partnering with global advocacy partners and using the strict guidelines of the CDCC Program.
The History of PPMD's Certified Duchenne Care Center Program
In 2012, PPMD convened a group of 17 institutions, parents, and representatives from advocacy and legislation, in its first Transforming Duchenne Care Initiative (TDCI) meeting, which set out to define Duchenne comprehensive care and services. Attendees discussed components of comprehensive care, discrepancies in care and services, and ways to reduce those discrepancies.
In 2014, PPMD launched the Certified Duchenne Care Center Program, the natural evolution of its robust TDCI meeting, through which PPMD awards qualified centers the title of Certified Duchenne Care Center. This designation is an effort to ensure centers:
- Maintain the highest standards in clinical and sub-specialty services
- Rapidly apply new evidence-based knowledge
- Minimize heterogeneity in clinical research outcomes, and
- Comply with standards in clinical care that were established by the CDC Care Considerations.
As part of its ongoing mission to end Duchenne, PPMD continues to insist that all people with Duchenne receive comprehensive care.
"The response to the CDCC program from the community has been tremendous," said Kathi Kinnett, MSN, CNP, PPMD's Senior Vice President of Clinical Care and co-director of Transforming Duchenne Care Initiative (TDCI). "All stakeholders in the Duchenne community, including families, industry, and providers, have come to value the standardized care and services that the CDCCs offer. In addition to improving patient and family access to comprehensive care and services, many of these CDCCs are major clinical trial sites. By providing CDCC's with the resources to secure a research liaison, we are providing families with an informed guide to help them navigate the diagnostic odyssey of Duchenne."
To learn more about PPMD's 17 Certified Duchenne Care Center Program and a map of currently certified centers, visit PPMD's website.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.
We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne. Follow PPMD on Facebook, Twitter, and YouTube.
SOURCE Parent Project Muscular Dystrophy
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