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PWS Receives Specific Disease Code to Track Medical Care and Outcomes

PWS receives ICD-10 code from the National Center for Health Statistics specific to Prader-Willi syndrome.

The National Center for Health Statistics has designated a specific ICD-10 code for Prader-Willi syndrome (PWS). Previously PWS was included as one of number of genetic disorders ICD-10-CM code Q87.1, which contains a large group of genetic disorders associated with short stature. However, the genetic causes, medical complications, and treatment of these disorders are very different.

2019-09-FPWR-enewsletter-narcolepsy-clinical-trial-Ben-Packard 23Beginning October 1, PWS will have a unique code. The new, dedicated ICD-10-CM code for PWS (Q87.11 Prader-Willi syndrome) will make it much easier to track medical care and outcomes in the PWS population. This designation will facilitate research studies aimed at understanding the true prevalence of PWS, the factors contributing to morbidity and mortality, and the outcomes of patient care and treatment.

“We’re thrilled to have this unique ICD-10 code for PWS, which will facilitate research studies and improve patient care”, said Theresa Strong, Director of Research Programs at FPWR. “ The new ICD-10 code will allow scientists to conduct epidemiologic research on PWS, determine true mortality rates, recruit patients for clinical trials, track outcomes of clinical interventions, and develop protocols for standard of care.

We’re grateful to the Prader-Willi Syndrome Association (USA) and the International Prader-Willi Syndrome Organisation (IPWSO) who partnered with us to advance the ICD-10 proposal, to the many PWS experts who contributed to the development of the proposal, and to Dr. Dan Driscoll, who presented the proposal to the ICD-10-CM Coordination and Maintenance Committee.”

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.