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Home - About VASCERN - Structure and Governance - Working Groups - Rare Disease Working Groups - Hereditary Haemorrhagic Telangiectasia (HHT-WG) - Registry
Hereditary Haemorrhagic Telangiectasia (HHT-WG)
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First Edition | 25th May, 2023

Registry

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 HHT Registry project will consist of the adaptation of the already existing registry used by our partner HCP, Hospices Civils de Lyon, France, that gathers HHT patient data. The necessary modifications of this database to make it FAIR are now underway.

More information on the HHT-WG Registry is available on the Registry page here.

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