HACKENSACK, N.J., Dec. 6, 2017 /PRNewswire-USNewswire/ -- UCSF Benioff Children's Hospital San Francisco (UCSF), became the 18th clinic named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), the most common fatal genetic disorder diagnosed in childhood, affecting approximately one in 5,000 boys.
PPMD's Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for all people living with Duchenne, began certifying qualifying centers in 2014. 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.
Led by clinic director Dr. Jonathan Strober, the Neuromuscular Clinic at UCSF Benioff Children's Hospital San Francisco specializes in the diagnosis, treatment, and research of disorders affecting the peripheral nerves and muscle. This includes the muscular dystrophies, a group of about 40 inherited disorders that cause the muscles to weaken and degenerate over time; genetic disorders of the peripheral nerves, known as Charcot-Marie-Tooth; and spinal muscular atrophy. The center is the only one of its kind in San Francisco that was created specifically for children.
When asked about the certification, Dr. Strober said, "My team and I are honored to be included in this amazing group of outstanding centers throughout the U.S. We are excited to be part of an organization that is working hard to ensure that people living with Duchenne are getting the best care possible, to allow for the highest quality, as well as quantity, of life for this special population of patients."
Kathi Kinnett, MSN, CNP, PPMD's Senior Vice President of Clinical Care and co-director of Transforming Duchenne Care Initiative (TDCI), is pleased that UCSF is joining the list of certified centers. Kinnett says, "UCSF offers a unique medical experience to its neuromuscular families. With a fairly small population, this center takes a slower paced, individualized approach to providing the care and services for their Duchenne families. UCSF is able to offer a full panel of comprehensive medical subspecialty care in a warm, personal environment, while also offering the opportunity to many families to participate in a growing number of clinical trials. We are proud and pleased to include UCSF and their team of competent, compassionate providers in our growing network of Duchenne 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 2018."
Recently PPMD announced the formation of a Global Certified Duchenne Care Center (CDCC) Program, offering a path forward for global neuromuscular patient advocacy groups to certify Duchenne Care Centers within their own countries. Patient advocacy groups, operating within their own country and under the guidance of PPMD's Certified Duchenne Care Center Program, grant certification to local Duchenne Care Centers that meet the high standards set forth by this program.
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.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs people 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 people 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 people with Duchenne live longer, stronger lives. We will not rest until every person 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.
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SOURCE Parent Project Muscular Dystrophy