The VASCERN Registry is an essential tool that offers a centralized repository for clinical data and information related to rare vascular diseases. By gathering clinical data, the registry aims to improve research, diagnosis, and care for patients. With standardized data collection and collaboration among healthcare professionals, researchers, and patients, the registry empowers personalized treatment, fosters innovation, and enhances patient care.
The HTAD Registry project will consist of the adaptation of the already existing registry developed by Assistance-Publique Hôpitaux de Paris for the group “Heritable Thoracic Aortic Diseases”, dealing with Marfan syndrome and other genetic diseases of the aorta. The necessary modifications of this database to make it available to all VASCERN HCPs and make the registry FAIR are now underway.
The HTAD WG are also participating in the European Society of Cardiology’s Registry of Pregnancy and Cardiac disease III (ROPAC III)
More information on the HTAD-WG registry is available on the Registry page here.