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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| Title: | 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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| Authors: | Réant P; Bordeaux University Medical Center, Bordeaux University, CIC-P 1401, Bordeaux, France.; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France., Kharoubi M; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Referral Center for Cardiac Amyloidosis, Filiere Cardiogen, GRC Amyloid Research Institute, APHP CHU Henri Mondor, Créteil, France.; Heart's Foundation, Vincennes, France.; 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., Donal E; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Université de Rennes, CHU Rennes, Service de Cardiologie Inserm, LTSI - UMR 1099, Rennes, France., Bauer F; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHRU Charles Nicolle, Rouen, France., Bézard M; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Referral Center for Cardiac Amyloidosis, Filiere Cardiogen, GRC Amyloid Research Institute, APHP CHU Henri Mondor, Créteil, France.; Heart's Foundation, Vincennes, France., Bisson A; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHRU de Tours, Tours, France.; Department of Cardiology, CHU Orleans, Orleans, France., Bodez D; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Centre Cardiologique du Nord, Saint Denis, France., Bouchot O; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Centre Hospitalier Annecy Genevois, Epagny-Metz-Tessy, France., Cariou E; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Cardiac Imaging Centre, University Hospital of Toulouse, Toulouse, France., Charron P; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; APHP, Department of Cardiology & Department of Genetics, Sorbonne Université, IHU ICAN, CHU Pitié Salpêtrière, Paris, France., Costa J; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU Robert Debré, Reims, France., Courand PY; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Hôpital de la Croix Rousse et Lyon Sud, Hospice Civil de Lyon, Lyon, France., Dagrenat C; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Centre Hospitalier Haguenau, Hagueneau, France., Delelis F; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, GHICL Hôpital St Vincent et St Philibert, Lille, France., Duval AJ; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Hôpital Louis Pradel, Bron, Hospice Civil de Lyon, Lyon, 69008, France., Eicher JC; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU de Dijon Bourgogne, Hôpital François Mitterrand, Dijon, France., Fraix A; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHRU de Nancy - Hôpitaux Brabois, Vandoeuvre lès Nancy, France., Gellen B; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Polyclinique de Poitiers Elsan, Poitiers, France., Gueffet JP; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Hôpital Privé Confluent, Nantes, France., Guijarro D; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Groupe Hospitalier Mutualiste, Grenoble, France., Habib G; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Assistance Publique Hôpitaux de Marseille, CHU de La Timone, Marseille, France., Hagège A; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, APHP Centre Hospitalier Georges Pompidou, Paris, France.; Faculty of Medicine, Paris Descartes University, Sorbonne Paris Cité, Paris, France.; Paris Cardiovascular Research Center, INSERM, UMR-970, Paris, France., Huttin O; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHRU de Nancy - Hôpitaux Brabois, Vandoeuvre lès Nancy, France., Jaccard A; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU Dupuytren, Limoges, France., Jeanneteau J; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Clinique Saint Joseph, Trelazé, France., Legallois D; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU de Caen, Caen, France., Logeart D; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Groupe Hospitalier Mutualiste, Grenoble, France.; Department of Cardiology, APHP, CHU Lariboisière, Paris, France., Legrand L; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, APHP CHU Pitié Salpétrière, Paris, France., Inamo J; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU de Martinique, Fort de France, France., Marguerit L; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Groupe Hospitalier Mutualiste, Grenoble, France., Mirailles R; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, APHP, CHU Lariboisière, Paris, France.; MIRACL.ai Laboratory, Multimodality Imaging for Research and Analysis Core Laboratory and Artificial Intelligence, Lariboisiere University Hospital (AP-HP), Paris, France., Pezel T; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, APHP, CHU Lariboisière, Paris, France.; MIRACL.ai Laboratory, Multimodality Imaging for Research and Analysis Core Laboratory and Artificial Intelligence, Lariboisiere University Hospital (AP-HP), Paris, France., Piriou N; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Nantes Université, CHU Nantes, INSERM, Cardiology Department, CIC 1413, Institut du Thorax, Nantes, France., Roubille F; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU de Montpellier, Montpellier, France., Mouhat B; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU de Besancon, Besancon Cedex, France., Trésorier R; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU de Clermont Ferrand, Clermont Ferrand, France., Von Hunolstein JJ; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Nouvel Hôpital Civil - Hôpitaux Universitaires de Strasbourg, Strasbourg, France., Taieb C; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Heart's Foundation, Vincennes, France.; European Market Maintenance Assessment, Fontenay sous-Bois, France., Salvat M; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, CHU Grenoble-Alpes, La Tronche, France., Zaroui A; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Referral Center for Cardiac Amyloidosis, Filiere Cardiogen, GRC Amyloid Research Institute, APHP CHU Henri Mondor, Créteil, France.; Heart's Foundation, Vincennes, France.; 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., Lairez O; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France.; Department of Cardiology, Centre Hospitalier Annecy Genevois, Epagny-Metz-Tessy, France., Damy T; F-CRIN GRACE Network and Réseau Amylose, F-CRIN GRACE, 1 rue Gustave Eiffel, Creteil, F-94000, France. thibaud.damy@aphp.fr.; Department of Cardiology, Referral Center for Cardiac Amyloidosis, Filiere Cardiogen, GRC Amyloid Research Institute, APHP CHU Henri Mondor, Créteil, France. thibaud.damy@aphp.fr.; Heart's Foundation, Vincennes, France. thibaud.damy@aphp.fr.; 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. |
| Source: | Orphanet journal of rare diseases [Orphanet J Rare Dis] 2025 Oct 27; Vol. 20 (1), pp. 534. Date of Electronic Publication: 2025 Oct 27. |
| Publication Type: | Journal Article; Research Support, Non-U.S. Gov't |
| Journal Info: | Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172 (Electronic) Linking ISSN: 17501172 NLM ISO Abbreviation: Orphanet J Rare Dis Subsets: MEDLINE |
| Database: | MEDLINE Ultimate |
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| ISSN: | 1750-1172 |
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| DOI: | 10.1186/s13023-025-04062-y |
