Veronica Hood, PhD: New ICD-10 Codes for Dravet Syndrome


The research coordinator of the Dravet Foundation provided background on the new ICD-10 codes announced for Dravet syndrome and how they came about.

"Patients who may be coded as having generalized intractable epilepsy may not fully represent the spectrum of the disease. That may limit what insurance is willing to pay for, whether that be medications or services related to that diagnosis.”

The Dravet Syndrome Foundation (DSF) recently announced that the National Center for Health Statistics designated new and specific ICD-10 codes for Dravet syndrome (DS). Among them include G40.83 DS, G40.833 DS intractable with status epilepticus, and G40.834 DS intractable without status epilepticus.

Until this point, DS was included in the ICD-10 as code G40.8 other epilepsy and recurrent seizures, which contained a broad group of epileptic disorders with different causes and treatment strategies that are not specific to DS. The new codes will allow clinicians to conduct epidemiologic research and prospective studies, determine true prevalence and morbidity and mortality rates, and help recruit patients for clinical trials.

Veronica Hood, PhD, research coordinator, DSF, claims the codes can bring immediate benefit in both the clinical care setting and from the patient-community perspective. Hood sat down with NeurologyLive to discuss the need for these codes and what went into the decision for change.

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