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Rare Epilepsies & ICD Codes
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About ICD Codes | ICD-10 Search Tools | Challenges | Additional Resources
About ICD Codes
ICD-10, developed by the World Health Organization, is a global system for coding diseases, symptoms, and mortality to standardize health reporting and improve tracking of global statistics. In the U.S., a modified version called ICD-10 is used specifically for diagnosis coding.
ICD codes help to:
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Track incidence, prevalence, comorbidity, and mortality
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Assess DEEs' impact on healthcare systems
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Optimize patient-specific care strategies
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Enhance healthcare provider communication
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Potentially reduce diagnosis time
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Target populations for precision therapies
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Support care management and health initiatives
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Select patients for clinical trial enrollment
ICD Code Search Tool
To promote the utilization of codes, REN is tracking rare epilepsies with codes and maintaining a list here. If you are aware of missing codes, please contact: info@rareepilepsynetwork.org
Rare Epilepsies with ICD Codes
Challenges with Obtaining an ICD Code
Across the rare epilepsies and neurodevelopmental disorders, it has been a challenge to secure codes. As of September 2024, the following disorders were under consideration by the National Center for Health Statistics (NCHS) for codes. Some disorders have been waiting for more than a year.
GRIA1
GRIA2
GRIA3
GRIA4
GRIK2
GRIN1
GRIN2A
GRIN2B
SCN2A
SCN8A
SLC6A1
STXBP1
FOXG1
CACNA1A
CTNNB1
USP7
KABUKI SYNDROME
(KMT2D; KDM6A)
Additional Resources
ICD-11 Is Coming Soon and We Need Your Help!,
Fight Like a Mother: When an ICD-10 Code Determines Life or Death,
ICD-10-CM, Centers for Disease Control and Prevention (CDC)
WHO Mortality Database, World Health Organization (WHO)
2.05: ICD-10-CM, MedicalBillingandCoding.org
Structure of an ICD-10-CM Code, National Cancer Institute (NCI)
Understanding ICD-10 Codes: Information for Consumers, AHIMA Foundation