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

Tsatsopoulou, A.; Abrams, D. J.; Anastasakis, A.; Antoniades, L.; Arbelo, E.; Arbustini, E.; Ashley, E. A.; Asimaki, A.; Basso, C.; Bossone, E.; Cadrin-Turigny, J.; Calkins, H.; Carbone, A.; Elliott, P. M.; Efthimiadis, G.; Franzese, M.; Frogoudaki, A.; Gimeno, J. R.; Mcgrath, J.; Ingles, J.; Kaski, J. P.; Keren, A.; Kohiadakis, G.; Lazarou, E.; Lazaros, G.; Lerakis, S.; Limongelli, G.; Meditskou, S.; Mestroni, L.; Metaxa, I.; Monda, E.; Papatheodorou, E.; Parharidou, D.; Patrianakos, A.; Pilichou, K.; Protonotarios, A.; Protonotarios, I.; Rega, S.; Rigopoulos, A.; Saffitz, J.; Syrris, P.; Taylor, M.; Peter Van Tintelen, J.; Vlachopoulos, C.; Xylouri, Z.; Mckenna, W. J.

doi:10.1016/j.hjc.2025.04.004

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.