Children’s Hospital of Richmond Named Certified Duchenne Care Center by PPMD

Children’s Hospital of Richmond Named Certified Duchenne Care Center by PPMD

The Children’s Hospital of Richmond (CHoR), Virginia, has been named Parent Project Muscular Dystrophy’s (PPMD) 26th Certified Duchenne Care Center (CDCC).

PPMD’s program, established in 2014, recognizes facilities with outstanding neuromuscular programs providing comprehensive care with recognized standards to all living with Duchenne muscular dystrophy (DMD), a multi-systemic genetic disorder characterized by progressive muscle loss.

CHoR is part of Virginia Commonwealth University (VCU), and its Muscular Dystrophy Association Care Center offers a robust clinical and investigative program that features comprehensive Duchenne care as well as multiple clinical studies on DMD progression and management, a press release states. Under the guidance of  Amy Harper, the center treats more than 60 Duchenne patients, promotes research, and recently added two pediatric neuromuscular specialists.

“Children, parents and families are at the heart of what we do every day,” said Harper, MD, a Child Neurology Society member and neuromuscular disease researcher who joined CHoR in 2016. “We’re honored to be recognized by PPMD, a group of dedicated parents and families, for our advocacy and innovation in the field of neuromuscular diseases.”

Join our MD forums: an online community especially for patients with Muscular Atrophy.

Kathi Kinnett, PPMD senior vice president of clinical care and CDCC program director, said Harper and her team have, in a relatively short time, made a marked impact.

“CHoR has close collaboration with the other PPMD Certified Duchenne Care Centers in the area,” Kinnett said. “Working together, these CDCCs are able to offer Duchenne patients and families access to most of the currently ongoing clinical trials. We are incredibly excited to add the expertise and compassion of Dr. Harper’s team to our growing network of certified centers.”

The certification program helps ensure that centers maintain the highest standards in clinical and sub-specialty services, including prompt adaptation of new evidence-based knowledge, high-quality research outcomes, and compliance with updated Duchenne Care Guidelines established by the Centers for Disease Control and Prevention.

“By standardizing care at PPMD’s Certified Duchenne Care Centers, many of which are major clinical sites, we are also improving Duchenne research and clinical trials by decreasing variability in care, and increasing the quality of clinical trial outcome measures,” the CDCC states on a webpage. “This results in speeding the time it takes therapies to reach the people who need them.”

The CDCC program is monitored by the 11-member CDCC Certification Committee, which reviews applications and site-visit summaries, and makes recommendations regarding certification. Kinnett said the PPMD gets CDCC inquiries weekly from centers around the world.

“Families in our community turn to PPMD to help identify the centers in the country providing the best in comprehensive Duchenne care and services,” she said. “Clinics and clinicians are realizing the value of the Certified Duchenne Care Center Program and therefore strive to be the best facility they can be for Duchenne patients and families.”

As global recognition of the importance of uniform care standards and guidelines spreads, PPMD expects to soon expand the CDCC program internationally.

Specific CDCC program requirements may be found here. Visit this site to find a Certified Duchenne Care Center.

Through research funding and patient advocacy, PPMD aims to end Duchenne, a disorder found in about 1 in 3,500 male births worldwide.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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