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An introduction to ICD code development for pediatric neurology
Monika J Baker1,2, Joshua L Bonkowsky2,3
1Department of Biomedical Informatics University of Utah School of Medicine Salt Lake City Utah USA.
Annals of the Child Neurology Society
|August 7, 2026
Summary
Developing new International Classification of Diseases 10th edition Clinical Modification (ICD-10-CM) codes for leukodystrophies is possible. This study outlines a successful approach for creating and approving new ICD-10-CM codes, benefiting the pediatric neurology community.
Area of Science:
- Medical Informatics
- Genetics and Genomics
- Neurology
Background:
- International Classification of Diseases 10th edition Clinical Modification (ICD-10-CM) codes are crucial for clinical data but have limitations for querying large datasets.
- Existing ICD codes, primarily for mortality tracking and billing, inadequately represent distinct clinical disorders like leukodystrophies.
Purpose of the Study:
- To describe an approach for developing new ICD-10-CM codes.
- To report the successful creation and approval of new ICD-10-CM codes for leukodystrophies.
Main Methods:
- Collaborated with the ICD-10-CM Coordination and Maintenance Committee and the National Center for Health Statistics (NCHS).
- Ensured appropriate code placement and submission, presented proposals with rationales, and gathered letters of support.
- Consulted future ICD-11-CM code structures and prioritized community-important codes.
Main Results:
- Successfully developed and obtained approval for 10 new leukodystrophy ICD-10-CM codes.
- Demonstrated the feasibility of navigating the ICD code development process.
- Highlighted the importance of multidisciplinary approaches and organizational support.
Conclusions:
- The development of new ICD-10-CM codes, while challenging, is achievable through a structured process.
- New codes for leukodystrophies enhance the representation of distinct disorders in clinical data.
- Understanding ICD code development is vital for the pediatric neurology community for clinical and research applications.
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