The Healthcare Amyloidosis European Registry (HEAR): design of a national registry with a European extension strategy, and foundation of the F-CRIN GRACE network
Year: 2025
Type: article
Abstract: 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.
Authors: 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
Institutions: Université de Bordeaux, Centre d'Investigation Clinique Plurithématique de Bordeaux, Inserm, Centre Hospitalier Universitaire Henri-Mondor, Hôpitaux Universitaires Henri-Mondor, Laboratoire Traitement du Signal et de l'Image, Centre Hospitalier Universitaire de Rennes, Université de Rennes, Hôpital Charles-Nicolle, Centre Hospitalier Universitaire de Tours, Centre hospitalier universitaire d'Orléans, Centre Cardiologique du Nord, Centre Hospitalier Annecy Genevois, Centre Hospitalier Universitaire de Toulouse, Sorbonne Université, Pitié-Salpêtrière Hospital, Fondation pour l’innovation en Cadiométabolisme et Nutrition, Centre Hospitalier Universitaire de Reims, Hôpital Robert-Debré, Hôpital de la Croix-Rousse, Hospices Civils de Lyon, Groupe Hospitalier de l'Institut Catholique de Lille, Hôpital Louis Pradel, CHU Dijon Bourgogne, Centre Hospitalier Régional et Universitaire de Nancy, Hôpital privé du Confluent, Groupe Hospitalier Mutualiste de Grenoble, Assistance Publique Hôpitaux de Marseille, Hôpital de la Timone, Sorbonne Paris Cité, Assistance Publique – Hôpitaux de Paris, Paris Cardiovascular Research Center, Université Paris Descartes, Hôpital Universitaire Dupuytren, Centre Hospitalier Universitaire de Caen Normandie, Hôpital Lariboisière, Centre Hospitalier Universitaire de Martinique, Centre Hospitalier Universitaire de Nantes, Centre d'Investigation Clinique de Nantes, Institut du Thorax, Nantes Université, Centre Hospitalier Universitaire de Montpellier, Centre Hospitalier Universitaire de Besançon, Centre Hospitalier Universitaire de Clermont-Ferrand, Hôpitaux Universitaires de Strasbourg, Hôpital Civil, Strasbourg, Centre Hospitalier Universitaire de Grenoble
Language: English
Subfield: Molecular Biology
Domain: Life Sciences
Open Access status: gold
Estimated APC paid: $2,990
OpenAlex ID: W4415559593