威廉姆斯综合征干预研究参与者的多样性
Eva Shin1,2, Caitlin Ravichandran1,3,4,5, Danielle Renzi1,4
1Lurie Center for Autism, 1 Maguire Road, Lexington, MA, 02421, USA.
Journal of autism and developmental disorders
|August 16, 2023
概括
威廉姆斯综合征 (WS) 研究中的参与者多样性报告不佳,特别是在种族和种族方面. 在WS干预研究中,需要增加少数群体和各种认知能力的代表性.
科学领域:
- 神经发育障碍 神经发育障碍
- 遗传学 遗传学 是一个
- 临床研究 临床研究
背景情况:
- 威廉姆斯综合征 (WS) 是一种影响发育的罕见遗传疾病.
- 干预研究旨在改善WS患者的治疗结果.
- 了解参与者的多样性对于研究结果的概括性至关重要.
研究的目的:
- 评估已发表的威廉姆斯综合征干预研究中的参与者多样性.
- 评估WS研究中的人口因素报告.
- 为了确定参与者代表性的差距.
主要方法:
- 一个系统的文献搜索确定了符合资格的前性治疗研究WS.
- 数据提取的重点是报告年龄,性别,认知能力,社会经济地位,种族和种族.
- 报告频率和人口统计特征的分析.
主要成果:
- 十一项研究符合纳入标准.
- 年龄和性别的报道很高 (100%),但种族 (18%) 和种族 (9%) 的报道很低.
- 在报告的参与者中 (n=33),88%是白人,平均年龄为20.9岁.
结论:
- 在WS干预研究中,报告社会经济地位,种族和种族等关键人口因素是不够的.
- 有必要加强种族和民族少数群体,老年人和那些在WS研究中具有更显著认知障碍的人的代表性.
- 提高WS研究的多样性对于更广泛的干预措施的适用性和理解至关重要.
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