Science Snapshot – ICD-10 codes and OCNDS

Author: Tierney Baum, CSNK2A1 Foundation Consultant

Establishing an ICD-10 code for rare disorders like OCNDS is important for increasing visibility by standardizing the language used to diagnose disorders Having an accurate code for OCNDS means that when new patients are evaluated by a medical provider, they will begin to have the unique code associated with their records; this makes tracking patients and their outcomes much easier for the OCNDS community. It will also be easier for newly diagnosed patients to connect with OCNDS community resources. These codes can also aid researchers in identifying patients eligible for research studies.

ICD-10 codes are pivotal for tracking OCNDS patient health outcomes, especially if a new therapy becomes available. Insurance companies may vary in their willingness to cover treatments based on how many patients are linked to a specific ICD-10 code in their records.

Without an appropriate code that accurately describes a patient’s diagnosis, healthcare providers must choose from alternative and likely less accurate codes. This could affect coverage and reimbursement for OCNDS patients, making access to care more challenging. Common codes used for OCNDS patients include general codes for intellectual disability/developmental delay, seizures, autism, and/or ADHD.

When used correctly, ICD-10 codes can be a powerful tool for the OCNDS community. Fortunately, the patient advocate community can play a direct role in working toward establishing a specific code for OCNDS.

At the time of writing this Science Snapshot (October 2024), the foundation has submitted a proposal and hopes it will be discussed at the March 2025 meeting.