Dravet Syndrome Foundation Announces New ICD-10 Codes Designated for Dravet Syndrome

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Dedicated ICD-10 codes for Dravet syndrome will make it easier for the field to conduct epidemiologic research and retrospective studies, determine true prevalence and morbidity and mortality rates, recruit patients for clinical trials, track outcomes of clinical interventions, and develop protocols for standard of care.

Having these unique codes will lead to improved clinical care for our patient community and will help healthcare professionals to better understand the lifelong impact of Dravet syndrome and associated health issues.

In honor of Epilepsy Awareness Month, the Dravet Syndrome Foundation (DSF) is pleased to announce that the National Center for Health Statistics has designated specific ICD-10 codes for Dravet syndrome, a neurodevelopmental disorder. The designation of the ICD-10 codes resulted from a combined effort from DSF and their Medical Advisory Board, made up of specialists in the field of Dravet syndrome. The new ICD-10 codes took effect on October 1, 2020.

Dedicated ICD-10 codes for Dravet syndrome will make it easier for the field to conduct epidemiologic research and retrospective studies, determine true prevalence and morbidity and mortality rates, recruit patients for clinical trials, track outcomes of clinical interventions, and develop protocols for standard of care. Until this point, Dravet syndrome was included in the ICD-10 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 Dravet syndrome.

“We truly appreciate the work of our Medical Advisory Board members who contributed their extensive expertise, as well as the other community stakeholders who supported DSF in applying for and receiving these ICD-10 codes,” said Mary Anne Meskis, Executive Director of DSF. “Having these unique codes will lead to improved clinical care for our patient community and will help healthcare professionals to better understand the lifelong impact of Dravet syndrome and associated health issues.”

The ICD-10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list from the World Health Organization (WHO). Approximately 27 countries use ICD-10 to document an individual’s medical condition for epidemiology, research, health insurance billing and reimbursement, and administration.

Dravet syndrome has received three new ICD-10 codes: G40.83 Dravet syndrome; G40.833 Dravet syndrome, intractable with status epilepticus; G40.834 Dravet syndrome, intractable, without status epilepticus. Health care providers should now begin utilizing these codes when caring for an individual with Dravet syndrome and the patient-community can spread awareness by ensuring their providers know about these new codes at their next visit.
Said DSF Research Coordinator, Veronica Hood, PhD, “These ICD-10 codes have the potential to improve outcomes for individual patients and broadly increase our overall medical and scientific knowledge of Dravet syndrome. This represents an important step in the process of increasing awareness and improving treatments for patients with Dravet syndrome.”

About Dravet syndrome
Dravet Syndrome is a catastrophic form of epilepsy that begins in infancy. It is a debilitating, life-long condition. Patients experience frequent seizures, poor seizure control, developmental delays and another associated health issues.

About Dravet Syndrome Foundation
Dravet Syndrome Foundation is a 501(3)c nonprofit organization whose mission is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. Since its inception in 2009, DSF has awarded almost $5M in research grant awards and over $176K in patient assistance grants. More information is available at http://www.dravetfoundation.org.

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Mary Anne Meskis
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