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

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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Publication Details

Journal
Orphanet Journal of Rare Diseases
Published
2025-10-26
DOI
https://doi.org/10.1186/s13023-025-04062-y
Citations
1
Primary Topic
Amyloidosis: Diagnosis, Treatment, Outcomes
Type
article
Field-Weighted Citation Impact
0.81

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article

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

Jocelyn Inamo, Diane Bodez, Muriel Salvat, Fabrice Bauer et al.
1 citations
Orphanet Journal of Rare Diseases
Amyloidosis: Diagnosis, Treatment, Outcomes
0.81
article

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

Jocelyn Inamo, Diane Bodez, Muriel Salvat, Fabrice Bauer, L. Legrand, Mélanie Bézard, Arnaud Jaccard, Jean‐Jacques Von Hunolstein, Barnabas Gellen, Pierre‐Yves Courand, François Roubille, Eve Cariou, Théo Pezel, Erwan Donal, Damien Legallois, Albert Hagège, C. Taïeb, Mounira Kharoubi, François Delelis, Thibaud Damy, P. Charron, Arnaud Bisson, Damien Logeart, Olivier Lairez, Basile Mouhat, Gilbert Habib, Antoine Fraix, Romain Trésorier, Antoine Jobbé‐Duval, R. Mirailles, Nicolas Piriou, Océane Bouchot, Olivier Huttin, Jérôme Costa, Jean-Pierre Gueffet, Charlotte Dagrenat, Patricia Réant, Amira Zaroui, Jean-Christophe Eicher, Julien Jeanneteau, Damien Guijarro, Léa Marguerit
article en
1 citations

Abstract

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.

Orphanet Journal of Rare DiseasesVol. 20(1)
Délégation Paris 5 (FR), Université d'Orléans (FR), Université de Bordeaux (FR), Inserm (FR), Université Fédérale de Toulouse Midi-Pyrénées (FR), Université Paris Cité (FR), Centre Hospitalier Universitaire de Grenoble (FR), Centre Hospitalier Universitaire de Toulouse (FR), Université de Poitiers (FR), Sorbonne Université (FR), Assistance Publique Hôpitaux de Marseille (FR), Centre Hospitalier Universitaire de Besançon (FR), Hôpital de la Croix-Rousse (FR), Hôpital Charles-Nicolle (FR), Sorbonne Paris Cité (FR), Heart Foundation (US), Centre Hospitalier Universitaire de Montpellier (FR), Centre Hospitalier Universitaire de Tours (FR), Assistance Publique – Hôpitaux de Paris (FR), Centre Hospitalier Régional et Universitaire de Nancy (FR), Hospices Civils de Lyon (FR), Hôpital Européen Georges-Pompidou (FR), Centre Hospitalier De Pau (FR), Bordeaux Population Health (FR), Hôpital Saint-Philibert (FR), Amyloidosis Foundation (US), Centre Hospitalier Universitaire de Poitiers (FR), Groupe Hospitalier Mutualiste de Grenoble (FR), Centre Hospitalier Universitaire de Caen Normandie (FR), CHU Dijon Bourgogne (FR), Clinique Saint-Joseph (BE), Hôpital Lariboisière (FR), Pitié-Salpêtrière Hospital (FR), Hôpital Robert-Debré (FR), Société Française d'Exportation des Ressources Éducatives (FR), Centre Hospitalier Universitaire de Clermont-Ferrand (FR), Hôpitaux Universitaires Henri-Mondor (FR), Paris Cardiovascular Research Center (FR), Centre Hospitalier Annecy Genevois (FR), Centre Hospitalier Universitaire de Martinique (MQ), Hôpital privé du Confluent (FR), Hôpital Louis Pradel (FR), Agir Pour les Maladies Chroniques (FR), Institut du Thorax (FR), Centre hospitalier universitaire d'Orléans (FR), Hôpitaux Universitaires de Strasbourg (FR), Centre Pompidou (FR), Université Gustave Eiffel (FR), Centre Cardiologique du Nord (FR), Centre Hospitalier Universitaire de Rennes (FR), Hôpital Dupuytren (FR), Hôpital Civil, Strasbourg (FR), Université de Rennes (FR), Université de Caen Normandie (FR)
Centre Hospitalier Régional Universitaire de Montpellier, Hospices Civils de Lyon, Centre Hospitalier Universitaire de Poitiers
Openalex Percentile: Top 22%
Amyloidosis: Diagnosis, Treatment, Outcomes
0.81
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