Description of the ENRAH Registry

The ENRAH Registry is designed to gather, organise, store, and share medical and scientific information regarding patients, families, and research projects related to Alternating Hemiplegia in Childhood (AHC). The primary purpose of the Registry is to contribute to the development of diagnostic, prophylactic, and therapeutic procedures that will lead to a reduction in the number of cases and the improved care of patients with AHC. The Registry is designed to include data and information on AHC and related health conditions that may contribute to research that will improve the care and health of AHC patients.

Use of the ENRAH Registry

Use of the ENRAH Registry is open to individuals and organizations belonging to ENRAH as well as to outside patients, families, health care professionals, and researchers that have a direct patient-centered interest in AHC or a related disease. Any data or information found within the ENRAH registry must be treated with full respect regarding its sources and its eventual application in health or scientific settings.

Questionnaire to the ENRAH Registry

Glossary to the questionnaiere