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NAXCARE: A Clinical Outcome Registry for Naxos Disease and Related Cardio-cutaneous Syndromes.
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NAXCARE: A Clinical Outcome Registry for Naxos Disease and Related Cardio-cutaneous Syndromes. Hellenic journal of cardiology : HJC = Hellenike kardiologike epitheorese Tsatsopoulou, A., Abrahms, D. J., Anastasakis, A., Antoniades, L., Arbello, 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., Tintelen, J. P., Vlachopoulos, C., Xylouri, Z., McKenna, W. J. 2025Abstract
The NAXCARE (NAXos disease and Cardio-cutaneous 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 ÌÇÐÄ´«Ã½ and clinical practice.
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