瑞士儿科个性化研究网络 (SwissPedHealth):一个联合的儿科国家数据流
Rebeca Mozun1, Fabiën N Belle2, Andrea Agostini3
1Department of Intensive Care and Neonatology and Children's Research Center, University Children's Hospital Zürich, Zurich, Switzerland.
BMJ open
|December 26, 2024
概括
瑞士PedHealth网络正在建立一个可持续的基础设施,用于使用标准化临床数据进行儿科研究. 该倡议旨在改善瑞士儿童的个性化护理和证据生成.
科学领域:
- 儿科医疗保健研究的研究.
- 数字健康转型的数字化转型
- 个性化医疗基础设施 个性化医疗基础设施
背景情况:
- 对于儿科手术的有限证据基础需要改进数据生成.
- 数字化转型为数据驱动,个性化的儿科护理提供了机会.
- 瑞士PedHealth网络解决了迫切需要更好的儿科医疗保健提供.
研究的目的:
- 在瑞士建立一个可持续和可扩展的儿科临床数据基础设施.
- 为了使常规儿科临床数据可互操作,标准化和质量控制.
- 为观察性研究,质量保证,临床试验和卫生政策制定准备数据.
主要方法:
- 在2022年9月启动,由SPHN和PHRT共同资助.
- 开发模块化治理和监管策略,利用SPHN自动化程序.
- 涉及一个多站点,多学科的指导委员会与患者和家庭代表.
- 包括数据标准化,可行性测试,罕见疾病多学科整合和公众/患者参与等工作包.
主要成果:
- 卫生数据库条例已被伦理委员会 (AO_2022-00018) 批准.
- 该网络正在开发标准化的数据收集和集成方法.
- 目前正在进行初步项目,以测试数据流的可行性和实用性.
- 与家庭的接触和生物伦理学被整合到该项目中.
结论:
- 瑞士PedHealth正在瑞士建立数据驱动的儿科研究的基本基础设施.
- 该网络旨在加强针对儿童的个性化护理和证据生成.
- 标准化,可互操作的数据将支持研究,质量改进和政策制定.
相关概念视频
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