February 11, 2019 / Care

PPMD Designates University of Rochester Medical Center as a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named the University of Rochester Medical Center (URMC) the 24th Certified Duchenne Care Center. This expanding program of elite centers, created in 2014 as part of PPMD’s Certified Duchenne Care Center Program, reviews and recognizes clinics nationwide for their outstanding neuromuscular programs.

Led by Dr. Emma Ciafaloni, the University of Rochester Duchenne Muscular Dystrophy Clinic is part of URMC. Their mission is to provide evidence based multidisciplinary clinical care that comply with standards in clinical care established by the Centers for Diseases Control and Prevention to patients with Duchenne and Becker muscular dystrophy of all ages.

According to Dr. Ciafaloni, “Our goal is to make a positive impact on the quality of life of children, adolescents, and adults affected by Duchenne and Becker by providing a team of experts in all specialties needed to best care for patients, a friendly and supportive atmosphere, and coordinated care that is highly accessible for families. We are honored to be recognized by PPMD as a Certified Duchenne Care Center and we will continue to provide the best care possible to our community.”

Kathi Kinnett, MSN, APRN, PPMD’s Senior Vice President of Clinical Care and director of PPMD’s Certified Duchenne Care Center (CDCC) Program, is excited that Dr. Ciafaloni and her team will be added to the growing network of Duchenne care offered at two dozen Certified Duchenne Care Centers across the Unites States.

“Dr. Ciafaloni and the comprehensive team at the University of Rochester Duchenne Muscular Dystrophy Clinic focus on all aspects of Duchenne, including timely diagnosis and multidisciplinary care,” said Kinnett. “In addition, they are involved in a number of clinical trials and have led numerous clinical research efforts. Their commitment to maintaining the established standards of care make them the perfect addition to PPMD’s Certified Duchenne Care Center Program.”

PPMD’s Certified Duchenne Care Center Program supports standardized, comprehensive care and services for all people living with Duchenne. Certification means 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.

Kinnett says that since launching the program in 2014, PPMD receives weekly inquiries from centers interested in applying for certification. “Families in our community turn to PPMD to help identify the centers in the country providing the best in comprehensive Duchenne care and services. 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. Industry, also, is recognizing the value of including patients in their studies, receiving standardized Duchenne care and, thus, strengthening the outcome measures in their clinical trials. As the importance of a set of standards and guidelines in clinical care are recognized globally, PPMD looks forward to expanding this program internationally in the New Year by partnering with other patient advocacy groups. We also look forward to more certifications in the U.S. in 2019.”

To learn more about PPMD’s Certified Duchenne Care Center Program, visit PPMD’s website. Click here to learn more about the history of PPMD’s Certified Duchenne Care Center Program and to access PPMD’s first published article on the program.

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