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

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

doi:10.1186/s13023-025-04062-y

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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

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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

Patricia Réant, Mounira Kharoubi, Erwan Donal, Fabrice Bauer, Mélanie Bézard, Arnaud Bisson, Diane Bodez, Océane Bouchot, Eve Cariou, Phillipe Charron, …

Orphanet journal of rare diseases, Vol.20(1), pp.534-11

27/10/2025

DOI: https://doi.org/10.1186/s13023-025-04062-y

PMID: 41139783

Résumé

Amyloidosis - epidemiology

Europe

Humans

Registries

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. 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. 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. 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.

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Titre: The Healthcare Amyloidosis European Registry (HEAR): design of a national registry with a European extension strategy, and foundation of the F-CRIN GRACE network
Créateurs - sans rôle: Patricia Réant - French Clinical Research Infrastructure Network
Mounira Kharoubi - Institut National de la Santé et de la Recherche Médicale (INSERM) U955, Clinical Epidemiology and Ageing (CEpiA) at Henri Mondor University Hospital and Institut Henri Mondor University Hospital, F-Créteil, France
Erwan Donal - Université de Rennes
Fabrice Bauer - Department of Cardiology, CHRU Charles Nicolle, Rouen, France
Mélanie Bézard - Heart's Foundation, Vincennes, France
Arnaud Bisson - Department of Cardiology, CHU Orleans, Orleans, France
Diane Bodez - Department of Cardiology, Centre Cardiologique du Nord, Saint Denis, France
Océane Bouchot - Department of Cardiology, Centre Hospitalier Annecy Genevois, Epagny-Metz-Tessy, France
Eve Cariou - Department of Cardiology, Cardiac Imaging Centre, University Hospital of Toulouse, Toulouse, France
Phillipe Charron - Fondation pour l’innovation en Cadiométabolisme et Nutrition
Jérôme Costa - Hôpital Robert-Debré
Pierre-Yves Courand - Hôpital de la Croix-Rousse
Charlotte Dagrenat - Department of Cardiology, Centre Hospitalier Haguenau, Hagueneau, France
Francois Delelis - Department of Cardiology, GHICL Hôpital St Vincent et St Philibert, Lille, France
Antoine Jobbe Duval - Department of Cardiology, Hôpital Louis Pradel, Bron, Hospice Civil de Lyon, Lyon, 69008, France
Jean-Christophe Eicher - Department of Cardiology, CHU de Dijon Bourgogne, Hôpital François Mitterrand, Dijon, France
Antoine Fraix - Centre Hospitalier Régional et Universitaire de Nancy
Barnabas Gellen - Department of Cardiology, Polyclinique de Poitiers Elsan, Poitiers, France
Jean-Pierre Gueffet - Department of Cardiology, Hôpital Privé Confluent, Nantes, France
Damien Guijarro - Department of Cardiology, Groupe Hospitalier Mutualiste, Grenoble, France
Gilbert Habib - Assistance Publique Hôpitaux de Marseille
Albert Hagège - Paris Cardiovascular Research Center
Olivier Huttin - Centre Hospitalier Régional et Universitaire de Nancy
Arnaud Jaccard - Department of Cardiology, CHU Dupuytren, Limoges, France
Julien Jeanneteau - Department of Cardiology, Clinique Saint Joseph, Trelazé, France
Damien Legallois - Department of Cardiology, CHU de Caen, Caen, France
Damien Logeart - Hôpital Lariboisière
Lise Legrand - Department of Cardiology, APHP CHU Pitié Salpétrière, Paris, France
Jocelyn Inamo - Centre Hospitalier Universitaire de Martinique
Léa Marguerit - Department of Cardiology, Groupe Hospitalier Mutualiste, Grenoble, France
Raphaël Mirailles - MIRACL.ai Laboratory, Multimodality Imaging for Research and Analysis Core Laboratory and Artificial Intelligence, Lariboisiere University Hospital (AP-HP), Paris, France
Théo Pezel - MIRACL.ai Laboratory, Multimodality Imaging for Research and Analysis Core Laboratory and Artificial Intelligence, Lariboisiere University Hospital (AP-HP), Paris, France
Nicolas Piriou - Institut du Thorax
Francois Roubille - Department of Cardiology, CHU de Montpellier, Montpellier, France
Basile Mouhat - Department of Cardiology, CHU de Besancon, Besancon Cedex, France
Romain Trésorier - Charmo University
Jean-Jacques Von Hunolstein - Department of Cardiology, Nouvel Hôpital Civil - Hôpitaux Universitaires de Strasbourg, Strasbourg, France
Charles Taieb - European Market Maintenance Assessment, Fontenay sous-Bois, France
Muriel Salvat - Department of Cardiology, CHU Grenoble-Alpes, La Tronche, France
Amira Zaroui - Institut National de la Santé et de la Recherche Médicale (INSERM) U955, Clinical Epidemiology and Ageing (CEpiA) at Henri Mondor University Hospital and Institut Henri Mondor University Hospital, F-Créteil, France
Olivier Lairez - Centre Hospitalier Annecy Genevois
Thibaud Damy - Institut National de la Santé et de la Recherche Médicale (INSERM) U955, Clinical Epidemiology and Ageing (CEpiA) at Henri Mondor University Hospital and Institut Henri Mondor University Hospital, F-Créteil, France. thibaud.damy@aphp.fr
Détails de publication: Orphanet journal of rare diseases, Vol.20(1), pp.534-11
Identifiants: 99158765409311
Unité académique: Physiologie et Médecine Expérimentale du coeur et des muscles - PhyMedExp
Langue: English
Type de ressource: Journal article