Duchenne/Becker and FSH Muscular Dystrophies Receive ICD-10 Codes

Parent Project Muscular Dystrophy, FSH Society Lead Effort to Obtain

Critical Diagnostic Classification Standard


Parent Project Muscular Dystrophy (PPMD)  along with collaborators the FSH Society and the Foundation to Eradicate Duchenne (FED), are pleased to announce that the nominations to create more specific ICD-10 codes for Duchenne/Becker muscular dystrophy (Duchenne/Becker) and facioscapulohumeral muscular dystrophy (FSHD) have been accepted by the International Classification of Diseases (ICD-10) Coordination & Maintenance Committee. The new codes will be included in the CMS FY 19 Coding Addenda, effective October 1, 2018.


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. 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.”

-- Pat Furlong, Founding President & CEO of PPMD

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. 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.”

-- Daniel Perez, Co-founder & Chief Science Officer of the FSH Society


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.

Related links

MD Community Moves Forward ICD Code Nomination for Duchenne/Becker

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