| Title: |
NAXCARE:a clinical outcome registry for Naxos disease and related cardiocutaneous syndromes |
| Authors: |
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.; Genetica; Cancer; Child Health; Circulatory Health |
| Publication Year: |
2026 |
| Subject Terms: |
Arrhythmogenic right ventricular cardiomyopathy; Carvajal syndrome; Desmoplakin; Naxos disease; Palmoplantar keratoderma; Plakoglobin; Cardiology and Cardiovascular Medicine |
| Description: |
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. |
| Document Type: |
article in journal/newspaper |
| File Description: |
text/plain |
| Language: |
English |
| ISSN: |
1109-9666 |
| Relation: |
https://dspace.library.uu.nl/handle/1874/466453 |
| Availability: |
https://dspace.library.uu.nl/handle/1874/466453 |
| Rights: |
info:eu-repo/semantics/OpenAccess |
| Accession Number: |
edsbas.7015CB3D |
| Database: |
BASE |