Heart Valve Society Mitral and Tricuspid Valve Database

Data elements include 293 baseline and case-mix variables, 78 clinical and imaging outcome measures, and two validated patient-reported outcome instruments (EQ-5D-5L and the Impact on Mental Health & Daily Activities questionnaire). Outcomes and definitions are harmonized with the International Consortium for Health Outcomes Measurement (ICHOM) heart valve disease standard set. Controllership is regulated through a Joint Data Registry Agreement, under which all participating centers are joint controllers.The system complies with GDPR and HIPAA requirements, ensuring patient privacy through pseudonymized and anonymized data extracts.

Researchers can request access to multicenter data by submitting a research or project proposal. Users may work with data already available in the registry or initiate project-based data collection by defining a specific patient population and timeframe. After review and approval by the Scientific Committee, researchers receive a double-pseudonymized dataset suitable for analysis.

Additional documentation, including guidance on proposal requirements, registry standards, and supporting materials, is available at: heartvalvesociety.org/Mitral/Registry/Documents/ All documents provided through this link and on this Dataverse page are available under a CC-BY license.