NAXCARE: a clinical outcome registry for Naxos disease and related cardiocutaneous syndromes.
Journal: Hellenic Journal Of Cardiology : HJC = Hellenike Kardiologike Epitheorese
Published:
Abstract
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.
Authors
Adalena Tsatsopoulou, Dominic Abrams, Aris Anastasakis, Loizos Antoniades, Elena Arbelo, Eloisa Arbustini, Euan Ashley, Angeliki Asimaki, Cristina Basso, Eduardo Bossone, Julia Cadrin Turigny, Hugh Calkins, Andreina Carbone, Perry Elliott, Georgios Efthimiadis, Monica Franzese, Alexandra Frogoudaki, Juan Gimeno, John Mcgrath, Jodie Ingles, Juan Kaski, Andre Keren, George Kohiadakis, Emilia Lazarou, George Lazaros, Stamatios Lerakis, Giuseppe Limongelli, Soultana Meditskou, Luisa Mestroni, Ioanna Metaxa, Emanuele Monda, Eustathios Papatheodorou, Despoina Parharidou, Alexandros Patrianakos, Kalliopi Pilichou, Alexandros Protonotarios, Ioannis Protonotarios, Salvatore Rega, Angelos Rigopoulos, Jeffrey Saffitz, Petros Syrris, Matt Taylor, Johannes Peter Van Tintelen, Charalambos Vlachopoulos, Zafeirenia Xylouri, William Mckenna
Relevant Conditions