The Angioma Alliance Scientific Advisory Board has suggested a consensus code moving forward to allow for better tracking. In order to increase sensitivity and specificity, we request that clinicians use the following ICD coding for their cerebral cavernous malformation patients:
228.02 Hemangioma of Intracranial Structures
In ICD-10, this code converts to:
D18.02 Hemangioma of Intracranial Structures
In Europe, Q28.3 Other Malformations of Cerebral Vessels code is used for familial CCM. This helps to differentiate familial CCM from sporadic, as only familial CCM is considered rare in Europe.
In ICD-11, cerebral cavernous malformation will have a unique code:
08 Diseases of the Nervous System
8B22 Certain Specified Cerebrovascular Diseases