Minimum Core Data Elements for Evaluation of Thoracic Aortic Disease.

Overview

Thoracic aortic aneurysms predisposing to aortic dissections are rare but potentially deadly conditions that can be inherited in families. Understanding the natural history and genetic causes of thoracic aortic disease (TAD) requires international collaboration. The aim of this project is to provide core data elements that can be assessed directly and summarized efficiently in research records while developing standards to harmonize data across registries and clinical trials. Ten contemporary TAD registries were analyzed to identify significant gaps in the amount and types of data that are needed for accurate, verifiable, and reproducible studies. The set of data elements recommended by this expert panel is intended to serve as a roadmap for future research combining precision clinical data with genetic and/or computational data to uncover new TAD phenotypes and risk factors. Standardization of data-acquisition protocols and definition of minimum requirements for computational modeling will be essential for future collaborative studies.