Today Parent Project Muscular Dystrophy (PPMD) named University of Utah Health (U of U Health) and the Intermountain Primary Children’s Hospital in Salt Lake City, Utah the 25th Certified Duchenne Care Center (CDCC). This expanding certification 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. Russell Butterfield, U of Utah Health, in partnership with Intermountain Primary Children’s Hospital, is a comprehensive neuromuscular program serving over 80 families living with Duchenne and Becker muscular dystrophy. In addition to Duchenne care, Dr. Butterfield is a primary investigator for several clinical trials:
“We are excited for our certification as the 25th Certified Duchenne Care Center and look forward to our continued partnership with PPMD in providing state-of-the-art care for our patients with muscular dystrophy. With the recent FDA approval for therapies for Duchenne for the first time and many new therapies expected in the next few years, we look forward to this transformative time in care for patients with Duchenne.”
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. Butterfield and his team have the honor and distinction of being PPMD’s 25th Certified Duchenne Care Center:
“Dr. Butterfield and his team worked hard for several years to amass all of the pediatric subspecialists needed to meet the requirements of CDCC Certification. We could not have been more thrilled that this center opened their doors as a Comprehensive Neuromuscular Center November 1, 2018. The effort of this team to raise the bar for, not only their Duchenne families, but for all of the families seen by their neuromuscular team, exemplifies the dedication, compassion, and expertise that each and every one of our CDCCs has for their patients and families. We commend U of U Health and Primary Children’s for persevering to meet our requirements for certification.”
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.
The significance of certifying the 25th clinic five years into the launch of the CDCC Program and on the eve of PPMD’s 25th anniversary, is not lost on Kinnett:
“For 25 years, care has been at the heart of everything PPMD does. We strive to ensure that people living with Duchenne are living longer, stronger lives, by helping you access expert healthcare providers, a comprehensive team of sub-specialists, and cutting edge treatments. One way we do this is by regularly visiting and assessing clinics in the U.S. to ensure they are complying with the standards of care and services that have been established in the Duchenne Care Guidelines through PPMD’s CDCC Program. In addition, since most of the CDCCs are major clinical trials sites, standardizing the care that clinical trial participants receive across sites strengthens the outcomes gathered from these sites. Stronger clinical trial data helps to speed therapies from bench to bedside. In a relatively short period of time, we have identified and awarded certification status to 25 amazing clinics across the U.S., and we look forward to growing this prestigious list in the coming years. This is a powerful network of care providers and we are proud to celebrate them.”
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.