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Sub-registries
Hereditary Haemorrhagic Telangiectasia Registry Heritable Thoracic Aortic Diseases Registry Medium Sized Arteries Registry Neurovascular Diseases Registry Pediatric and Primary Lymphedema Registry Vascular Anomalies Registry

Heritable Thoracic Aortic Diseases Registry

The HTAD registry collects data from patients with rare vascular diseases who are being treated at various expert centres across Europe. Its primary objective is to enhance our understanding of these rare diseases through various research endeavors, such as natural history studies, genotype-phenotype correlations, population comparisons, and cross-country care comparisons.

HTAD Registry

  • The programme has been implemented (CleanWeb) and is in production.
  • HTAD HCP APHP Hopital Bichat (France), Ghent (Belgium), Amsterdam (Netherlands) are participating in the registry
    • Expert centers outside VASCERN are also participating in the Registry, in France: Lyon, Marseille, Toulouse, Lille, Dijon, Caen, Rennes, Nancy, Strasbourg
  • Accounts have been created for other HTAD centers in Europe and now they are awaiting the signature of legal documentation from these centers in order to start entering patient data
  • The database has been declared on ERDRIdor (European Directory of Registries)

List of Studies:

  • A study comparing the care of patients in France, Netherlands, Belgium, and Spain is enrolling patients
  • A study evaluating the effect of therapy on age at prophylactic surgery is enrolling patients.

Contact Information:

If you have any questions or inquiries, please follow the instruction below

For Patients:

  • For questions regarding your participation or data, please consult your treating physician.
  • For inquiries regarding data security, kindly email vascern_registry@vascern.eu.

For Researchers or Policymakers:

  • A Data Access Committee is constituted, and includes patient representatives and representing members from the different centers entering data into the registry.
  • To submit a proposal, please fill in the Data Access Form here and send it to dac@vascern.eu
  • If you are a researcher or policymaker seeking information related to data utilization, please reach out to dac@vascern.eu.

For General Inquiries:

Data elements:

All elements collected in this registry can be found here.

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