Decode Duchenne Announces 500th Patient Application
HACKENSACK, N.J., Feb. 28, 2017 /PRNewswire-USNewswire/ — Parent Project Muscular Dystrophy (PPMD) announced the 500th patient application to their highly successful Decode Duchenne program. Decode Duchenne is a nationwide program to assist individuals with Duchenne muscular dystrophy in accessing genetic testing, interpretation, and counseling. The program began in 2013 with the support of Sarepta Therapeutics, Inc. and in 2015 significantly expanded thanks to the support of BioMarin Pharmaceuticals, Inc., PTC Therapeutics, and Sarepta Therapeutics, Inc.
Decode Duchenne provides genetic testing, interpretation, and counseling at no cost to eligible patients who are unable to access testing due to barriers such as a lack of insurance or insufficient insurance coverage. For patients with Duchenne, genetic testing is used to identify the genetic mutation and confirm the diagnosis. In addition, genetic testing can be used not only to determine a patient’s eligibility for certain clinical trials, but also their compatibility for potential therapies currently available or on the horizon. Despite the benefits of testing, in some cases patients are unable to access genetic testing through their insurance provider.
Sarepta Therapeutics, Inc. is currently the title sponsor of the program and PTC Therapeutics continues as a supporting sponsor. The goal of the next phase of Decode Duchenne is to expand the program by making the application and testing process as simple as possible for both clinicians and patients. We recently launched an online application form that is well-liked by clinicians for its ease of use and efficiency. In addition, we will be promoting the use of saliva samples rather than blood for those patients who have difficulty traveling and/or difficulty with the blood draw. All of the testing through Decode Duchenne is performed at EGL Genetics (formerly Emory Genetics Laboratory). With the recent expansion of EGL Genetics, their sales team will further promote the Decode Duchenne program with clinicians across the country.
PPMD’s Founding President and CEO, Pat Furlong, is grateful for the support for Decode Duchenne. «Since the initial start-up phase of Decode Duchenne in 2013, we have been able to identify people with Duchenne within populations that traditionally have not had access to genetic testing, interpretation, and counseling because of costs associated with the process. With the initial and ongoing support of Sarepta Therapeutics, and the partnership of BioMarin Pharmaceutical and PTC Therapeutics in 2015, we have seen incredible growth in the program. To have surpassed 500 patient applications in this short amount of time speaks to the incredible need of free genetic testing and counseling in our community, as well as the talent and compassion of the Decode Duchenne team.»
Furlong continues, explaining the importance of genetic testing: «Identifying people with Duchenne is critical in our fight to end this devastating disorder so that optimal care is provided as soon after diagnosis as possible, as well as connecting patients to the most relevant clinical trials or approved therapies. We could not be more appreciative or proud to collaborate with exceptional industry partners who continue to prove their commitment to the Duchenne community by supporting important programs like Decode Duchenne.»
The program is administered by PPMD through DuchenneConnect, a clinical registry that connects people living with Duchenne to clinical trials. Ann Martin, co-director of DuchenneConnect and a genetic counselor, believes that the Decode Duchenne program is more important than ever: «With the Duchenne community receiving our first FDA approvals ever in the last few months, the free testing, interpretation and counseling that is provided through Decode Duchenne is more important than ever before. The steady increase in applications and call volume highlight the importance of the program in our community. And the Decode Duchenne team and sponsors will continue to find ways to expand our mission to improve diagnostic efficiency and accuracy at all ages and stages.»
To learn more about Decode Duchenne, including how you or a loved one can participate, please visit DuchenneConnect.org.
About Decode Duchenne
Decode Duchenne is a genetic testing, interpretation, and counseling program through Parent Project Muscular Dystrophy’s (PPMD) DuchenneConnect, a registry for people with Duchenne or Becker muscular dystrophy. Decode Duchenne has been supported by Sarepta Therapeutics, PTC Therapeutics, and BioMarin Pharmaceutical Inc. It provides genetic testing, interpretation, and counseling at no cost to eligible patients who are unable to access testing due to barriers such as a lack of insurance or insufficient insurance coverage.
To learn more about Decode Duchenne, including information on how to participate, visit DuchenneConnect.org.
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.
DuchenneConnect is a robust and cutting-edge registry and resource that serves the needs of the Duchenne and Becker community. The purpose of DuchenneConnect is to connect Duchenne and Becker patients with actively recruiting clinical trials and research studies, and to educate patients and families about Duchenne and Becker care and research. At the same time, DuchenneConnect is a valuable resource for clinicians and researchers in academia and industry, allowing access to aggregated, de-identified information provided by patients and their families — information that is vital to advances in the care and treatment of Duchenne.
DuchenneConnect was created in 2007 by Parent Project Muscular Dystrophy (PPMD), with assistance from the Centers for Disease Control and Prevention and Emory Genetics. PPMD is the sole guardian of DuchenneConnect and its material. To learn more about DuchenneConnect, visit www.DuchenneConnect.org.
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SOURCE Parent Project Muscular Dystrophy