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Background <p>Cardiac amyloidosis (CA) is a rare disease that can lead to poor quality of life, conduction disorders, arrhythmia, heart failure, and even death. Fortunately, specific treatments that can modify the natural history of the disease and the disease outcomes are now available. However, data on the prevailing patient management procedures and long-term outcomes of CA are scarce.</p> Objective <p>The Healthcare Amyloidosis European Registry (HEAR) is 34-centre registry initiated in France and structured for European expansion through the French Clinical Research Infrastructure Network’s Group for Research on Amyloidosis and Care Excellence and the European Clinical Research Infrastructure Network. We expect to include 8500 patients between January 2021 and December 2027.</p> Methods <p>The HEAR has been designed to capture detailed demographic, clinical, laboratory, imaging, and therapeutic data from both suspected and confirmed cases of all cardiac amyloidosis subtypes, including wildtype transthyretin amyloidosis, variant transthyretin amyloidosis, light-chain amyloidosis, and rarer forms. This comprehensive approach has been designed to (i) improve our understanding of real-world diagnostic pathways, treatment practices, and patient outcomes and (ii) incorporate patient-centred innovations. To enhance the patient-centred nature of the registry, patient-reported outcome measures (PROMs) will be systematically collected.</p> Conclusions <p>By addressing diagnostic pathways, real-world management and PROMs and by applying technological innovations and European scalability, the next-generation HEAR is establishing itself as a valuable resource for clinical research, public health interventions, and better patient care in the field of CA.</p>

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The Healthcare Amyloidosis European Registry (HEAR): design of a national registry with a European extension strategy, and foundation of the F-CRIN GRACE network

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年10月27日

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  • Patricia Réant,
  • Mounira Kharoubi,
  • Erwan Donal,
  • Fabrice Bauer,
  • Mélanie Bézard,
  • Arnaud Bisson,
  • Diane Bodez,
  • Océane Bouchot,
  • Eve Cariou,
  • Phillipe Charron,
  • Jérôme Costa,
  • Pierre-Yves Courand,
  • Charlotte Dagrenat,
  • Francois Delelis,
  • Antoine Jobbe Duval,
  • Jean-Christophe Eicher,
  • Antoine Fraix,
  • Barnabas Gellen,
  • Jean-Pierre Gueffet,
  • Damien Guijarro,
  • Gilbert Habib,
  • Albert Hagège,
  • Olivier Huttin,
  • Arnaud Jaccard,
  • Julien Jeanneteau,
  • Damien Legallois,
  • Damien Logeart,
  • Lise Legrand,
  • Jocelyn Inamo,
  • Léa Marguerit,
  • Raphaël Mirailles,
  • Théo Pezel,
  • Nicolas Piriou,
  • Francois Roubille,
  • Basile Mouhat,
  • Romain Trésorier,
  • Jean-Jacques Von Hunolstein,
  • Charles Taieb,
  • Muriel Salvat,
  • Amira Zaroui,
  • Olivier Lairez,
  • Thibaud Damy

摘要

Background

Cardiac amyloidosis (CA) is a rare disease that can lead to poor quality of life, conduction disorders, arrhythmia, heart failure, and even death. Fortunately, specific treatments that can modify the natural history of the disease and the disease outcomes are now available. However, data on the prevailing patient management procedures and long-term outcomes of CA are scarce.

Objective

The Healthcare Amyloidosis European Registry (HEAR) is 34-centre registry initiated in France and structured for European expansion through the French Clinical Research Infrastructure Network’s Group for Research on Amyloidosis and Care Excellence and the European Clinical Research Infrastructure Network. We expect to include 8500 patients between January 2021 and December 2027.

Methods

The HEAR has been designed to capture detailed demographic, clinical, laboratory, imaging, and therapeutic data from both suspected and confirmed cases of all cardiac amyloidosis subtypes, including wildtype transthyretin amyloidosis, variant transthyretin amyloidosis, light-chain amyloidosis, and rarer forms. This comprehensive approach has been designed to (i) improve our understanding of real-world diagnostic pathways, treatment practices, and patient outcomes and (ii) incorporate patient-centred innovations. To enhance the patient-centred nature of the registry, patient-reported outcome measures (PROMs) will be systematically collected.

Conclusions

By addressing diagnostic pathways, real-world management and PROMs and by applying technological innovations and European scalability, the next-generation HEAR is establishing itself as a valuable resource for clinical research, public health interventions, and better patient care in the field of CA.