在川崎病的机构间和跨国合作的景观
Rocio Gutierrez Rojas1, Fabiola Breault1, Raed Alzyoud2
1Division of Pediatric Cardiology, CHU Sainte-Justine, University of Montreal, Montreal, Quebec, Canada.
Paediatrics & child health
|December 1, 2025
概括
川崎病 (KD) 的协作研究小组通常是全国性的和多中心的,尽管存在资金挑战,但成功地制作了出版物. 需要宣传,以确保为这些至关重要的合作提供财政支持.
科学领域:
- 类风湿病学 类风湿病学
- 儿科 儿科 儿科
- 流行病学 流行病学
背景情况:
- 综合研究对于推进基于证据的关于罕见疾病的知识至关重要,比如川崎病 (KD).
- 第十四届国际川崎病研讨会强调了全球合作解决KD的重要性.
- 为了评估KD现有的协作努力,进行了一项调查.
研究的目的:
- 描述以川崎病为重点的合作研究小组的结构,运作和成果.
- 确定在KD研究中促进全球合作的挑战和机会.
主要方法:
- 一个23个问题的调查分发给了川崎病 (KD) 协作小组.
- 合作努力的定义是循环临床试验,多机构或国际研究以及专门的流行病学小组等特征.
- 收集和分析了有关集团组建,规模,治理,资金和出版成果的数据.
主要成果:
- 21个协作小组参与其中,其中大多数是单一国家 (67%) 的,并在1991年至2022年之间成立.
- 多机构小组涉及1-20个国家的2-150个机构,有10-100名活跃成员.
- 大多数 (67%) 发表了2-11篇同行评审的出版物,62%有集中治理,但只有33%有书面的使命声明.
- 虽然48%的人缺乏正式资金,但其他人则得到了赠款,政府,捐款或行业的支持.
结论:
- 大多数被调查的川崎病 (KD) 协作小组都是多中心和全国性的,证明了成功的研究成果.
- 尽管许多团体的资金限制很大,但协作有效地产生了同行评审的出版物.
- 显然需要加大宣传力度,以确保这些必要的协作研究倡议获得可持续的资金.
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