ICD 10 is a medical coding reference that the medical world is supposed to use for identifying and classifying diseases. It codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases.
DMD in this list of diseases is classified under Primary disorders of muscles G71.0
Over here Duchenne is clubbed with
This means that from a data gathering perspective there is no way to distinguish Duchenne from other muscle disorders. There are links on the above
Is this what we should be also focussing on. If the raw data in the system does not allow isolation of Duchenne I think there will be a lot you confusion in the decision making process. We all know that even within Duchenne there is a host of variations which influence the cure. Why not have a dedicate code for Duchenne so that Hospitals and Clinics are not messing up the data by mixing everything related to muscle disorders into one single code.
PS: There is even confusion on the name. Are we looking that few years down the line there will be no DMD but SMD (Severe muscular dystrophy)
An after thought.
PPMD is financing studies to figure out why DMD kids are having a different progression or a different reaction to drug. ICD system is supposed to capture this.
Between 1999-2007 there were 6,382 deaths in the United States where ICD-10 G71.0 is the cause. There is no way to know how many of these were DMD kids. And there goes the business case for a investor in a company like AVI or Prosensa which is focussed on very specific drugs needed by DMD