ICD-10 Coding Adventures! Why PWS Needs Its Own ICD-10 Code


A big shout out to Dr. Dan Driscoll today! He is at a meeting of the ICD-10 Coordinating & Maintenance Committee (CMC) in Baltimore, making the case that PWS should have its own, unique ICD-10 code.

What’s an ICD-10 code, you may ask? That’s the code your doctor enters into your medical record to indicate your diagnosis, symptoms and medical procedures. In fact, doctors often use several ICD-10 codes to describe a clinical situation (e.g., a rare disorder ICD-10 code + a code describing associated symptoms such as scoliosis, obesity, or a psychiatric problem). These codes are important for a number of reasons – they are used in billing to determine whether or not your insurance will reimburse the visit and/or prescribed treatment; they are a way for medical professionals to communicate; and, importantly for PWS, they can be searched in large databases of electronic health records to understand complications of a disorder, including the medical problems commonly associated with a disorder, how patients are being treated, and the benefit and risks of different treatments.

In order to efficiently search medical databases and get accurate information about a disease, it’s critical that all medical professionals are using the same, unique code for that disease. In the current ICD-10 coding system, PWS is lumped in with several other disorders that are unrelated with respect to genetics, symptoms, outcomes and treatments. This makes it impossible to accurately understand the complications, hospitalizations and treatment of PWS at a population level.

Why doesn’t PWS have its own ICD-10 code? That’s not very clear (at least not to me). There are ICD-10 codes for some very specific situations –some of which might be considered superfluous, at best. For example, there are unique ICD-10 codes for being bitten by an Orca whale, not getting along with your in-laws, injury from a spacecraft collision, burn from your water-skis being on fire, being struck by a macaw (that big parrot bird) and being sucked into a jet engine. (I am not making this up! See more "unique" ICD-10 codes here.) But, currently, there is no ICD-10 code specific for PWS, which is a problem.

FPWR, in partnership with PWSA(USA) and IPWSO, is seeking to change this. Thus, we’ve submitted a request to the ICD-10 CMC providing the rationale on why PWS needs a unique, identifying code. We were very pleased that the CMC has agreed to hear our case, and tremendously grateful that Dr. Driscoll has agreed to take time out of his extremely busy schedule to fly to Baltimore and speak before the CMC. For those of you who were looking for something to do today– you can watch the entire CMC meeting live on YouTube.

We thank Dr. Driscoll for all he does for the PWS community, including taking on this critically important (if not overly exciting!) task.  

Understanding PWS - Slide Deck

Topics: News

Theresa Strong


Theresa V. Strong, Ph.D., received a B.S. from Rutgers University and a Ph.D. in Medical Genetics from the University of Alabama at Birmingham (UAB). After postdoctoral studies with Dr. Francis Collins at the University of Michigan, she joined the UAB faculty, leading a research lab focused on gene therapy for cancer and directing UAB’s Vector Production Facility. Theresa is one of the founding members of FPWR and has directed FPWR’s grant program since its inception. In 2016, she transitioned to a full-time position as Director of Research Programs at FPWR. She remains an Adjunct Professor in the Department of Genetics at UAB. She and her husband Jim have four children, including a son with PWS.

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