The purpose of this survey is to capture demographic data on AHC patients. This data will be housed in a registry, and may be used for approved research purposes in the future. Only de-identified patient data will be shared with researchers.
This survey is intended to be completed by AHC patient caregivers. Some AHC patients over the age of 18 may choose to complete the survey themselves if they are able. If you are completing this survey for yourself, “the patient” refers to you, your symptoms, and your experiences for the remainder of this survey.
We estimate the survey should take approximately 2-3 minutes to complete.
Your input is of great value. Thank you for your participation!
