Effective October 1, 2025, the new code for SCN2A-related neurodevelopmental disorders is QA0.0101.
From Advocacy to Action: SCN2A Now Has Its Own ICD-10 Code
The FamilieSCN2A Foundation is thrilled to announce that advocacy efforts with the CDC over the last four years have resulted in the assignment of a unique ICD-10-CM code for the SCN2A community. Effective October 1, 2025, the new code for SCN2A-related neurodevelopmental disorders will be QA0.0101.
“An ICD-10-CM code for SCN2A means that clinical care data on anyone with an SCN2A- related disorder can now be tracked using this specific code. This will translate to improvements in research methods and clinical care for our community. It’s a huge win. Now we need everyone to encourage all their healthcare providers to use it, to ensure the code represents the SCN2A community to clinicians, insurers, the FDA, and researchers as accurately and completely as possible,” said Leah Myers, Executive Director of FamilieSCN2A Foundation.
Family Letter and Wallet Card
The FamilieSCN2A Foundation is taking the lead on ensuring that families and clinicians know about the new code. Registered families in the United States will receive a letter with instructions and a wallet card with the new SCN2A ICD-10 code. To request a card, please contact Amanda Gale, Program Manager.
For Clinicians and Professionals
EFFECTIVE October 1, 2025: New ICD-10 code for SCN2A Neurodevelopmental Disorders is QA0.0101
Using the correct ICD codes helps with insurance payments, research efforts, surveillance, epidemiology, health system utilization measurements, and clinical trial enrollment.
Coding best practices:
QA0.0101 is not meant to replace other condition codes; rather, it is used in addition to other codes for related disorders such as epilepsy and autism spectrum disorder.
List codes for associated medical conditions and/or intellectual disabilities.
Condition and symptom codes are still needed for proper insurance reimbursement of rehabilitation and other services (i.e. hypotonia code for PT).
For consistency among providers, please document new codes in patient’s electronic health record.
Encourage families to share new codes with all providers, including urgent / emergency care providers. FamilieSCN2A Foundation will take the lead in providing education and promotion materials.
Additional Resources:
Advocacy Timeline
Request for an SCN2A-specific code:
2025 – new code (QA0.010 goes into effect on October 1, 2025)
2023 – ICD-10 Coordination and Maintenance Committee Meeting to consider SCN2A-specific code
2021 – FamilieSCN2A Foundation applied for new SCN2A-specific code