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Minimum Core Data Elements for Evaluation of Thoracic Aortic Disease
Andreina Carbone1, Mary J Roman2, Melissa L Russo3
1Department of Public Health, University of Naples "Federico II", Naples, Italy; Unit of Cardiology, University of Campania "Luigi Vanvitelli", Naples, Italy.
JACC. Advances
|July 18, 2025
Summary
This study identifies essential data elements for thoracic aortic disease (TAD) research. Standardizing data collection across registries will improve understanding of inherited aortic aneurysms and dissections.
Area of Science:
- Cardiovascular Genetics
- Medical Informatics
- Rare Diseases
Background:
- Thoracic aortic aneurysms (TAAD) and dissections are rare, heritable, and life-threatening conditions.
- Understanding TAAD natural history and genetic factors necessitates international research collaboration.
- Current TAD registries have significant data gaps hindering accurate, verifiable, and reproducible studies.
Purpose of the Study:
- To define core data elements for thoracic aortic disease (TAD) research.
- To develop standards for harmonizing data across TAD registries and clinical trials.
- To establish a roadmap for future TAD research integrating clinical, genetic, and computational data.
Main Methods:
- Analysis of data from ten contemporary TAD registries.
- Expert panel review to identify critical data elements.
- Assessment of data gaps in current research records.
Main Results:
- Significant inconsistencies and gaps were found in data collected by TAD registries.
- A recommended set of core data elements was identified.
- Essential standards for data acquisition and computational modeling were proposed.
Conclusions:
- Standardized data elements are crucial for advancing TAD research.
- Future research should integrate precision clinical, genetic, and computational data.
- Harmonized data protocols will facilitate collaborative studies and uncover new TAD phenotypes and risk factors.
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