Paris Registry Core

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The Paris Registry Core (PRC) was originally designed to be the European equivalent of the Houston Registry Core. This means that the items included are very similar, if not identical. This was deemed necessary due to the different legal aspects of data sharing between Europe and the US. The General Data Protection Regulation (GDPR) governs the transfer of data relating to European patients and is not required in the US.

The PRC was then developed within VASCERN (the European Reference Network for Vascular Anomalies), which includes expert centers from all over Europe and was funded by the European Union in 2017. It is a centralized registry based at Assistance Publique - Hôpitaux de Paris in Paris, France. It includes clinical and genetic data contributed by participating VASCERN sites and other centers of expertise in HTAD across Europe. Each site is invited to participate by contributing its data to global research projects, including those within MAC. Further information is available on a dedicated webpage on the VASCERN website: https://vascern.eu/group/registry/sub-registries/heritable-thoracic-aortic-diseases-registry/

The overarching mission of the registry is to facilitate collaborative research with the aim of improving the diagnosis, risk stratification and management of patients with heritable thoracic aortic disease (HTAD) and related vascular disorders. The list of items collected in this registry can be found here. This list is subject to change to adapt to specific research projects. It includes:

  • Demographics and family history
  • Clinical presentation and associated conditions
  • Aortic and arterial imaging results across the lifespan
  • Surgical and medical management details
  • Outcomes such as aneurysm progression, dissections and interventions
  • Genetic testing results and variant interpretation
  • Longitudinal follow-up, including cardiovascular events and survival.

The PRC uses CleanWeb and other secure research platforms for the storage and management of VASCERN data. It complies with GDPR rules.