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DOI 10.1016/j.hjc.2025.04.004

Медицинская библиотека · Hellenic journal of cardiology : HJC = Hellenike kardiologike epitheorese · 2025

NAXCARE: a clinical outcome registry for Naxos disease and related cardiocutaneous syndromes.

Tsatsopoulou Adalena, Abrams Dominic Jr, Anastasakis Aris, Antoniades Loizos, Arbelo Elena, Arbustini Eloisa, Ashley Euan A, Asimaki Angeliki, Basso Cristina, Bossone Eduardo, Cadrin-Turigny Julia, Calkins Hugh, Carbone Andreina, Elliott Perry M, Efthimiadis Georgios, Franzese Monica, Frogoudaki Alexandra, Gimeno Juan Ramon, McGrath John, Ingles Jodie, Kaski Juan Pablo, Keren Andre, Kohiadakis George, Lazarou Emilia, Lazaros George, Lerakis Stamatios, Limongelli Giuseppe, Meditskou Soultana, Mestroni Luisa, Metaxa Ioanna, Monda Emanuele, Papatheodorou Eustathios, Parharidou Despoina, Patrianakos Alexandros, Pilichou Kalliopi, Protonotarios Alexandros, Protonotarios Ioannis, Rega Salvatore, Rigopoulos Angelos, Saffitz Jeffrey, Syrris Petros, Taylor Matt, Peter van Tintelen Johannes, Vlachopoulos Charalambos, Xylouri Zafeirenia, McKenna William J

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Аннотация

The NAXCARE (NAXos disease and Cardiocutaneous Assessment and Registry for Evaluation) is a global initiative designed to collect, store, and analyze clinical outcomes data on patients with Naxos disease and related cardiocutaneous syndromes (CCS). This registry aims to fill the gaps in clinical knowledge, enhance treatment approaches, and improve patient outcomes by systematically documenting disease progression, genetic profiles, and patient care pathways. The following methodology outlines the registry's design, data collection protocols, management, security measures, and anticipated contributions to research and clinical practice.

Для цитирования: Tsatsopoulou Adalena, Abrams Dominic Jr, Anastasakis Aris, Antoniades Loizos, Arbelo Elena, Arbustini Eloisa, Ashley Euan A, Asimaki Angeliki, Basso Cristina, Bossone Eduardo, Cadrin-Turigny Julia, Calkins Hugh, Carbone Andreina, Elliott Perry M, Efthimiadis Georgios, Franzese Monica, Frogoudaki Alexandra, Gimeno Juan Ramon, McGrath John, Ingles Jodie, Kaski Juan Pablo, Keren Andre, Kohiadakis George, Lazarou Emilia, Lazaros George, Lerakis Stamatios, Limongelli Giuseppe, Meditskou Soultana, Mestroni Luisa, Metaxa Ioanna, Monda Emanuele, Papatheodorou Eustathios, Parharidou Despoina, Patrianakos Alexandros, Pilichou Kalliopi, Protonotarios Alexandros, Protonotarios Ioannis, Rega Salvatore, Rigopoulos Angelos, Saffitz Jeffrey, Syrris Petros, Taylor Matt, Peter van Tintelen Johannes, Vlachopoulos Charalambos, Xylouri Zafeirenia, McKenna William J. NAXCARE: a clinical outcome registry for Naxos disease and related cardiocutaneous syndromes.. Hellenic journal of cardiology : HJC = Hellenike kardiologike epitheorese. 2025. DOI: 10.1016/j.hjc.2025.04.004.

Предметные рубрики MeSH

HumansRegistriesEctodermal DysplasiaFailure to ThriveHeart Defects, CongenitalFacies
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