TY - JOUR
T1 - NAXCARE
T2 - a clinical outcome registry for Naxos disease and related cardiocutaneous syndromes
AU - Tsatsopoulou, Adalena
AU - Abrams, Dominic JR
AU - Anastasakis, Aris
AU - Antoniades, Loizos
AU - Arbelo, Elena
AU - Arbustini, Eloisa
AU - Ashley, Euan A.
AU - Asimaki, Angeliki
AU - Basso, Cristina
AU - Bossone, Eduardo
AU - Cadrin-Turigny, Julia
AU - Calkins, Hugh
AU - Carbone, Andreina
AU - Elliott, Perry M.
AU - Efthimiadis, Georgios
AU - Franzese, Monica
AU - Frogoudaki, Alexandra
AU - Gimeno, Juan Ramon
AU - McGrath, John
AU - Ingles, Jodie
AU - Kaski, Juan Pablo
AU - Keren, Andre
AU - Kohiadakis, George
AU - Lazarou, Emilia
AU - Lazaros, George
AU - Lerakis, Stamatios
AU - Limongelli, Giuseppe
AU - Meditskou, Soultana
AU - Mestroni, Luisa
AU - Metaxa, Ioanna
AU - Monda, Emanuele
AU - Papatheodorou, Eustathios
AU - Parharidou, Despoina
AU - Patrianakos, Alexandros
AU - Pilichou, Kalliopi
AU - Protonotarios, Alexandros
AU - Protonotarios, Ioannis
AU - Rega, Salvatore
AU - Rigopoulos, Angelos
AU - Saffitz, Jeffrey
AU - Syrris, Petros
AU - Taylor, Matt
AU - Peter van Tintelen, Johannes
AU - Vlachopoulos, Charalambos
AU - Xylouri, Zafeirenia
AU - McKenna, William J.
N1 - Publisher Copyright:
© 2025 Hellenic Society of Cardiology. Publishing services by Elsevier B.V. This is an open access article under the CC BY-NC-ND license. http://creativecommons.org/licenses/by-nc-nd/4.0/
PY - 2026/1
Y1 - 2026/1
N2 - 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.
AB - 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.
KW - Arrhythmogenic right ventricular cardiomyopathy
KW - Carvajal syndrome
KW - Desmoplakin
KW - Naxos disease
KW - Palmoplantar keratoderma
KW - Plakoglobin
UR - https://www.scopus.com/pages/publications/105005518292
U2 - 10.1016/j.hjc.2025.04.004
DO - 10.1016/j.hjc.2025.04.004
M3 - Review article
C2 - 40316016
AN - SCOPUS:105005518292
SN - 1109-9666
VL - 87
SP - 147
EP - 159
JO - Hellenic Journal of Cardiology
JF - Hellenic Journal of Cardiology
ER -