Until now, Duchenne/Becker and FSHD have been among a broad category of diagnoses in the standard International Classification of Diseases (ICD). The International Classification of Diseases (ICD) is the foundation for the identification of health trends and statistics, and the international standard for reporting diseases and health conditions. Owned, developed, and published by the World Health Organization (WHO), it is the diagnostic classification standard for all clinical and research purposes. The healthcare industry, clinical providers, IT professionals, data administrators, insurance providers, government agencies, and many other stakeholders utilize ICD codes to properly populate electronic health records, track epidemiological trends, and support medical reimbursement decisions.
"The lack of an ICD code specific to Duchenne/Becker and FSH muscular dystrophy has proven a barrier to diagnosis, care, surveillance, research, and access" explained Pat Furlong, Founding President & CEO of PPMD. "While we have established surveillance through the passage of the MD-CARE Act, we have also had to develop costly and time-consuming processes to discern Duchenne, Becker and FSH muscular dystrophy cases from those abstracted using previous ICD codes. With approved therapies, payer decisions are now being impacted as over-estimates of economic impacts are made when applying the calculations to their datasets. And while care standards have been established, CDC has been unable to assess whether those standards are being implemented. The implementation of these new ICD-10 codes will create a systematic and sizeable impact on the diagnostic, care, research, and outcomes landscapes for our Duchenne/Becker and FSHD communities."
Over the last two years, PPMD has led an effort to increase the specificity of the ICD-10 codes for the muscular dystrophies. PPMD worked closely with partners in the Center for Disease Control & Prevention's National Center for Birth Defects and Disabilities (CDC NCBDD), the Centers for Medicare & Medicaid Services (CMS), and the FSH Society.
"This is very important news. It shows the value of the FSH Society's scientific and policy work with its non-profit and agency partners," said Daniel Perez, Co-founder & Chief Science Officer of the FSH Society. "Nothing could be more technically specialized from a healthcare perspective than this effort to get an ICD-10 code for each type of primary muscular dystrophy. The benefits down the road for this entire class of muscle diseases will be substantial and this opens up possibilities for greater clinician awareness, outcomes research, and policy."
Both PPMD and FSH Society are grateful to Dr. Kathryn Wagner of the Kennedy Krieger Institute, the American Academy of Pediatrics (AAP), Dr. Katherine Mathews of the University of Iowa, Dr. Christina Westfield of the New York State Department of Health, Dr. Emma Ciafaloni of the University of Rochester, and representatives of the scientific advisory boards of both PPMD and the FSH Society for their technical expertise.
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.
About FSH Society
The FSH Society is the world's largest patient-driven organization for facioscapulohumeral muscular dystrophy, or FSHD, one of the most prevalent forms of muscular dystrophy. We are laser-focused on speeding the development of treatments and a cure for the nearly one million people worldwide who are affected. We invest in research initiatives that will move us further faster toward treatments, by activating and empowering patients, families and their allies, and by mobilizing resources from industry, government, and other organizations around a smart strategy to speed up therapy development.
The Society has funded over $9 million in research initiatives that have propelled us into the era of treatment discovery and development. Our work has contributed to identifying the genetic mechanism of FSHD, development of animal models, validation of clinical trial endpoints, and early-stage drug discovery research. Other signature achievements include co-authorship of the 2001 MD CARE Act that mandated federal attention to all of the muscular dystrophies and led to the NIH-funded Wellstone Cooperative Centers for FSHD Research, the 2015 publication by the National Academy of Neurology of the first evidence-based FSHD care guideline, and the nationwide FSHD Clinical Trial Research Network in 2016. For ten consecutive years, the Society has received the Charity Navigator's four-star rating, the highest distinction held by less than one percent of non-profit organizations in the country.
The FSH Society offers a community of support, news and information for FSHD patients and families through its website at https://www.fshsociety.org. For more information about FSHD research programs, please contact the Society at 781-301-6650.