中新网上海消息，6月29日，一场由中国心内科领域的权威专家共同参与的盛会落下帷幕。这次会议不仅宣布了全国范围内的“法布雷筛查行动各省倡议”，更标志着中国“法布雷专病数据库”搭建工作的正式启动。
这一重大行动是为了提升我国心内科临床医生对法布雷病的筛查诊断能力，以应对罕见病筛查与诊断的难题。来自全国各地的40余位顶尖心内科专家齐聚上海，共同探讨并推动法布雷病的早诊早治。
据了解，法布雷病是一种罕见的遗传性疾病，其症状表现多样且复杂，早期筛查和诊断尤为关键。由于该疾病筛查和诊断的复杂性，往往导致患者难以得到及时的诊断和治疗。因此，“法布雷专病数据库”的建立意义重大。
该数据库的建立旨在集结全国医疗机构的病例数据，通过大数据分析和研究，提高医生对法布雷病的诊断准确性，并为患者提供更加精准的治疗方案。同时，该数据库还将为我国乃至全球的医疗研究和治疗提供宝贵的资源。
这一项目的启动无疑为中国的心内科医疗水平和罕见病诊疗领域注入了新的活力，期待未来能够通过更多努力，让更多罕见病患者得到及时、准确的诊断和治疗。
英语如下：
News Title: The Launch of “Fabry Disease Database” to Assist in the Solution of Screening and Diagnosis Challenges in Cardiology
Keywords: Fabry Disease Database, Launch, Assist in Screening and Diagnosis
News Content:
Title: China Launches “Fabry Disease Database” to Address Rare Disease Screening and Diagnosis Challenges
Shanghai News from China News Service, June 29 — An authoritative gathering of Chinese cardiovascular experts has recently concluded, unveiling the nationwide “Fabry Screening Campaign” and marking the official launch of the “Fabry Disease Database” to address screening and diagnosis challenges in cardiology.
This significant action aims to enhance the screening and diagnostic abilities of Chinese cardiovascular doctors in Fabry disease, in response to the challenges of rare disease screening and diagnosis. Over 40 top cardiovascular experts from across the country gathered in Shanghai to jointly explore and promote early diagnosis and treatment of Fabry disease.
Fabry disease is a rare genetic disorder with diverse and complex symptoms. Early screening and diagnosis are particularly critical. The complexity of screening and diagnosis often leads to patients receiving delayed treatment. Therefore, the establishment of the “Fabry Disease Database” holds great significance.
The purpose of this database is to collect case data from medical institutions nationwide, improve doctors’ diagnostic accuracy for Fabry disease through big data analysis, and provide more precise treatment options for patients. Simultaneously, this database will provide valuable resources for medical research and treatment in China and globally.
The launch of this project has undoubtedly injected new vitality into China’s cardiovascular medical field and the field of rare disease diagnosis and treatment. It is expected that with more efforts, timely and accurate diagnosis and treatment will be available to more patients with rare diseases.
【来源】http://www.chinanews.com/life/2024/06-29/10242667.shtml
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