拉皮德联盟:一个临床和翻译性垂体瘤研究平台
Michael Karsy1, Varun Kshettry2, Paul Gardner3
1Department of Neurosurgery, The University of Utah, Salt Lake City, Utah, United States.
Journal of neurological surgery. Part B, Skull base
|January 26, 2024
概括
一个新的多中心联盟,下垂体腺瘤和相关疾病登记册 (RAPID) 成立,以推进下垂体瘤研究. 该倡议旨在通过协作数据收集和质量改进来克服罕见病研究的挑战.
科学领域:
- 内分泌学 在内分泌学.
- 神经外科 神经外科
- 在瘤学瘤学.
背景情况:
- 下垂体瘤研究受到疾病稀有性和缺乏协作平台的阻碍.
- 有限的翻译-临床研究伙伴关系存在于脑下垂体疾病.
- 之前的研究没有为形成多中心研究联盟提供足够的指导.
研究的目的:
- 描述建立了多中心倡议的下垂体腺瘤和相关疾病 (RAPID) 登记册.
- 促进质量改进,研究,奖学金,并在下垂体瘤的研究创新成果.
- 分享RAPID成立的经验,以帮助未来的财团发展.
主要方法:
- 审查了以前的研究注册所面临的挑战,以告知RAPID的发展.
- 成立了一个指导委员会,章程,数据协调中心和领导团队.
- 在一个符合HIPAA的平台上开发了常见的垂体腺瘤和相关囊的标准化临床模块.
主要成果:
- 快速涉及11个学术美国下垂体中心.
- 在所有地点获得机构审查委员会的批准;启动了回顾性数据编译和前性数据收集.
- 为非功能性腺瘤,前乳腺瘤,壮病,库辛氏病,脑膜瘤和拉特克裂囊创建的标准化数据字段.
结论:
- 拉皮德联盟为多中心垂体瘤和手术研究提供了基础结构.
- 未来的研究方向包括结果基准测试,生物银行,多中心研究和健康经济学.
- 该联盟旨在促进脑下垂体疾病的翻译研究和基于价值的护理研究.
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