Paris Registry Core

The Paris Registry Core (PRC) serves as MAC's European registry centre, supporting collaborative research in Heritable Thoracic Aortic Disease (HTAD) and related vascular disorders across Europe.

Developed within VASCERN (the European Reference Network for Rare Multisystemic Vascular Diseases), the PRC was established to support the collection and management of clinical and genetic data from participating centres throughout Europe in accordance with General Data Protection Regulation (GDPR) requirements. Through participation in international initiatives, including MAC, the PRC helps facilitate collaborative research aimed at improving the diagnosis, risk stratification, and management of HTAD.

MISSION AND FUNCTION OF THE PARIS REGISTRY CORE

The overarching mission of the registry is to facilitate collaborative research aimed at improving the diagnosis, risk stratification, and management of patients with Heritable Thoracic Aortic Disease (HTAD) and related vascular disorders.

The registry collects a comprehensive range of standardized clinical data, including patient demographics and family history, clinical presentation and associated conditions, aortic and arterial imaging findings throughout the lifespan, details of medical and surgical management, clinical outcomes such as aneurysm progression, aortic dissections, and interventions, genetic testing results and variant interpretation, as well as longitudinal follow-up data including cardiovascular events and survival.

The Paris Registry Core (PRC) maintains a centralized registry supporting research in Heritable Thoracic Aortic Disease (HTAD) and related vascular disorders. Data contributed by participating centres includes:

  • Demographics and family history
  • Clinical presentation and associated conditions
  • Aortic and arterial imaging 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 registry provides a valuable resource for collaborative research across Europe and internationally.

The PRC was developed within VASCERN (the European Reference Network for Rare Multisystemic Vascular Diseases), which includes expert centres from across Europe.

The registry supports:

  • Participation by centres throughout Europe
  • International collaboration among HTAD experts
  • Contributions to global research initiatives, including MAC
  • Multicentre research projects
  • Data sharing in accordance with European regulatory requirements

This collaborative framework helps advance knowledge and improve care for individuals affected by HTAD.

The PRC collects standardized clinical and genetic information to support research in HTAD and related vascular disorders.

Key data elements include:

  • Clinical presentation and associated conditions
  • Imaging findings
  • Surgical and medical management information
  • Genetic testing results
  • Variant interpretation
  • Long-term patient outcomes

Combining clinical and genetic data supports a deeper understanding of disease characteristics and outcomes.

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

This structure supports transparent, ethical and compliant research. By bringing together data from expert centres, the PRC enables research focused on disease progression, clinical outcomes, and risk stratification while supporting international collaboration between VASCERN, MAC, and the broader HTAD research community.

The PRC operates within a secure research environment designed to meet European data protection requirements.

Its responsibilities include:

  • Compliance with General Data Protection Regulation (GDPR) requirements
  • Secure storage and management of research data
  • Protection of patient confidentiality
  • Ethical and compliant data governance
  • Support for approved research activities

This framework ensures responsible management of patient data while supporting collaborative scientific research.

The PRC supports research aimed at improving the diagnosis, risk stratification, and management of Heritable Thoracic Aortic Disease (HTAD).

Through contributions from participating centres across Europe, the registry facilitates:

  • Clinical research initiatives
  • International collaborative projects
  • Research into disease progression and outcomes
  • Studies supporting improved patient management
  • Contributions to global research efforts, including MAC

Importance of the Paris Registry Core

The Paris Registry Core collects clinical and genetic information from participating centres across Europe, including demographics and family history, clinical presentation, imaging results, genetic testing data, treatment information, and long-term patient outcomes.

This centralized resource supports collaborative research into Heritable Thoracic Aortic Disease (HTAD) and related vascular disorders.

By bringing together data from expert centres, the PRC enables research focused on disease progression, clinical outcomes, and risk stratification while supporting international collaboration between VASCERN, MAC, and the broader HTAD research community.