Rare Epilepsies & ICD Codes
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About ICD Codes | ICD-10 Search Tools | Challenges | Additional Resources
About ICD Codes
ICD-10, the International Classification of Diseases, 10th Revision, is a globally recognized system for coding diseases, symptoms, abnormal findings, and mortality. Developed by the World Health Organization (WHO), ICD-10 standardizes health condition reporting and enables better tracking of global disease and mortality statistics. In the U.S., a modified version called ICD-10-CM is used for diagnosis coding, and ICD-10-PCS for inpatient procedure coding. Notably, there is often a significant delay in the U.S. adoption of each ICD revision; ICD-10, endorsed by WHO in 1990, was only adopted by the U.S. in 2015. While WHO has already released ICD-11, it may still be some time before it is adopted in the U.S., highlighting variable adoption timelines across countries.
ICD codes may help:
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accurately determine incidence, prevalence, comorbidity profile, and mortality
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determine the impact of DEEs on the healthcare system
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determine the best care for each patient
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improve communication amongst healthcare providers
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may decrease time to diagnosis
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identify populations that may benefit from precision therapies
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identify populations for care management and population health initiatives
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identify patients for enrollment in clinical trials.
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