纳克索斯病和相关心皮肤综合征的临床结果登记。

IF 3 3区医学 Q2 CARDIAC & CARDIOVASCULAR SYSTEMS

Hellenic Journal of Cardiology Pub Date : 2025-04-30 DOI:10.1016/j.hjc.2025.04.004

Adalena Tsatsopoulou, Dominic Jr Abrams, Aris Anastasakis, Loizos Antoniades, Elena Arbelo, Eloisa Arbustini, Euan A Ashley, Angeliki Asimaki, Cristina Basso, Eduardo Bossone, Julia Cadrin-Turigny, Hugh Calkins, Andreina Carbone, Perry M Elliott, Georgios Efthimiadis, Monica Franzese, Alexandra Frogoudaki, Juan Ramon Gimeno, John McGrath, Jodie Ingles, Juan Pablo 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 J McKenna

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引用次数: 0

摘要

NAXCARE（纳索斯病和心血管-皮肤评估和登记评估）是一项全球倡议，旨在收集、存储和分析纳索斯病和相关心血管综合征（CCS）患者的临床结果数据。该登记处旨在通过系统地记录疾病进展、遗传谱和患者护理途径，填补临床知识空白，加强治疗方法，改善患者预后。以下方法概述了登记处的设计、数据收集协议、管理、安全措施以及对研究和临床实践的预期贡献。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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

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.

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来源期刊

Hellenic Journal of Cardiology CARDIAC & CARDIOVASCULAR SYSTEMS-

CiteScore

4.90

自引率

7.30%

发文量

审稿时长

56 days

期刊介绍： The Hellenic Journal of Cardiology (International Edition, ISSN 1109-9666) is the official journal of the Hellenic Society of Cardiology and aims to publish high-quality articles on all aspects of cardiovascular medicine. A primary goal is to publish in each issue a number of original articles related to clinical and basic research. Many of these will be accompanied by invited editorial comments. Hot topics, such as molecular cardiology, and innovative cardiac imaging and electrophysiological mapping techniques, will appear frequently in the journal in the form of invited expert articles or special reports. The Editorial Committee also attaches great importance to subjects related to continuing medical education, the implementation of guidelines and cost effectiveness in cardiology.