罕见病中心高质量发展的阶段性探索与思考——基于区域妇儿医学中心的实践

Phased Exploration and Reflections on the High-Quality Development of Rare Disease Centers: Based on the Practice of a Regional Women and Children's Medical Center

  • 摘要: 广州医科大学附属妇女儿童医疗中心(简称“广妇儿”)于2023年12月成立了罕见病医学中心并承担广东省罕见病质控中心建设任务。作为国家儿童区域医疗中心和粤港澳大湾区妇幼健康的核心机构,广妇儿依托妇儿专科优势,围绕妇儿罕见病诊疗需求,在临床诊疗与服务体系、技术体系与平台、科研创新与学术影响力、人才梯队与能力建设、质控及区域协作等方面开展系统化布局,探索罕见病医学中心高质量发展的建设路径。本文回顾广妇儿罕见病医学中心的建设脉络,总结高质量发展的阶段性经验,并对未来发展提出思考。

     

    Abstract: Guangzhou Women and Children's Medical Center (GWCMC) established a Rare Disease Medical Center in December 2023 and assumed responsibility for the construction of the Guangdong Provincial Rare Disease Quality Control Center. As a national children's regional medical center and a core institution for maternal and child health in the Guangdong-Hong Kong-Macao Greater Bay Area, GWCMC leverages its disciplinary strengths in maternal and pediatric specialties, centers on the diagnosis and treatment needs of rare diseases in women and children, and carries out a systematic layout in such aspects as clinical diagnosis, treatment and service system, technical system and platforms, scientific research innovation and academic influence, talent echelon and capacity building, as well as quality control and regional collaboration. This paper reviews the development trajectory of the GWCMC Rare Disease Center, summarizes its phased experience in high-quality development, and offers reflections on future directions.

     

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