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Home - Network - Rare Disease Working Groups - Marfan, Loeys-Dietz syndr…(HTAD-WG) - Clinical Decision Support Tools - Outcome Measures
Marfan, Loeys-Dietz syndr…(HTAD-WG)
Introduction
Disease Information
Overview Genetic Testing for Hereditary Thoracic Aortic Aneurysm Disease Familial Thoracic Aortic Aneurysm and Dissection (Familial TAAD) Marfan Syndrome
Experts & Centers
Full Members Affiliated Partners Developing Partners Map of Centers
Clinical Decision Support Tools
Patient Pathways Do’s and Don’ts Clinical Practice Guidelines (CPGs) adopted Clinical Expert Consensus Statements Written Outcome Measures
Registry by The Registry WG
Research
Clinical Trials/Observational Studies Research Publications
Training and Education
E-Learning Pills of Knowledge (PoK) Webinars
Sub Working Groups
Aortic Imaging Gene Compendium Pediatrics Variants

Outcome Measures

The HTAD-WG has developed patient outcome measures to maximize the number of patients receiving good care. They are working to develop patient-reported outcome measures (PROM).

Result (1)
Patient-centered Quality Outcome Measures of Heritable Thoracic Aortic Disease Care
September 08 2023
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