An introduction to ICD code development for pediatric neurology

AbstractObjectiveQuerying large data sets in the United States is challenging due to limitations of International Classification of Diseases 10th edition Clinical Modification (ICD‐10‐CM) codes. ICD codes were developed for tracking mortality and for billing purposes but are also the most widely used data structure to represent clinically significant and distinct disorders. We report an approach for developing new ICD codes based on our work creating new codes for leukodystrophies.MethodsImportant steps in ICD‐10‐CM code development include working with the ICD‐10‐CM Coordination and Maintenance Committee, a subset of the National Center of Health Statistics (NCHS); working to ensure the code has the best placement and is appropriate for submission; presenting the code and accompanying proposal (rationale) at a Coordination and Maintenance Committee Meeting; and requesting letters of support and addressing concerns raised by various groups.ResultsWe describe the historical development of ICD codes as well as their current hierarchical structure. Important features for successful code development included consulting future ICD‐11‐CM code structure; determining which codes are most i