Hereditary Haemorrhagic Telangiectasia Registry

CIROCO-HHT registry is gathering data from patients with Hereditary Haemorrhagic Telangiectasia, seen in various expert centres throughout Europe. We plan to initially share the minimum dataset. The aim of this registry is to gain knowledge about this rare disease. This will be done by sharing our knowledge on this disease, comparing populations, needs and care between countries.

HHT Registry CIROCO

• The database is accessible on the internet (it was agreed within the HHT-WG that only the minimum dataset would be filled in for the moment at the European level).
• The dictionary of variables from the CIROCO database has been translated from French into English.
• They are currently working on the FAIR data point with the VASCERN data stewards.
• Within HHT HCP Hospices Civils de Lyon, they are working on the authorizations with the CNIL (French data protection authority) and the contracts to be transmitted to each European center to be signed by their clinical research department and the legal department.

List of Studies:

No studies have been performed yet.

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:

• If you are a researcher or policymaker seeking information related to data utilization, please reach out to dac@vascern.eu.

For General Inquiries:

• For any other questions or concerns regarding the HHT registry, please contact hht_registry_info@vascern.eu.

Data elements:

All elements collected in this registry can be found here.