让智力和/或发育残疾的年轻人作为合作者参与一个比较有效性试验:一个社区参与的研究方法
K L Berg1,2, D Herrman3, L Bernard1
1Department of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago, Chicago, IL, 60612, USA.
Contemporary clinical trials communications
|December 11, 2024
概括
参与智力和/或发育残疾 (IDD) 的青年作为临床试验的合作者,提高了研究的相关性和可访问性. 这种社区参与的研究协议确保了残疾年轻人的高保留率和有意义的投入.
科学领域:
- 医疗保健服务研究 医疗服务研究
- 关于残疾人的研究.
- 临床试验 临床试验
背景情况:
- 对智力和/或发育障碍 (IDD) 的年轻人行为健康需求的有效研究需要包容性实践.
- 这篇文章详细介绍了一项协议,用于将年轻人与IDD作为比较有效性临床试验的合作者.
研究的目的:
- 用社区参与研究 (CEnR) 方法描述一项用于将IDD的年轻人参与临床试验的协议.
- 提高对残疾青年进行临床试验研究的可访问性和包容性.
主要方法:
- 该议定书以社区参与研究 (CEnR) 框架为指导,强调了避免危害,可访问性,权力共享和透明沟通等原则.
- 有IDD的年轻人通过青年咨询委员会 (YAC) 和夏季学者计划参与了两年.
主要成果:
- 在两年内,在YAC和夏季学者计划中100%保留IDD的年轻人.
- 青少年反导致了研究修改,产品的共同开发,改善了研究可访问性和相关性.
结论:
- 这些发现为研究人员和临床医生提供了一个模型,有效地让残疾年轻人参与临床试验研究.
- 利用该协议可以提高针对这些服务不足的人群的研究的包容性和影响.
相关概念视频
01:30Community Based Intervention
33
Community-based interventions in mental health represent a paradigm shift from institution-centered care to treatments embedded within the fabric of local communities. By prioritizing inclusion and leveraging existing societal structures, this approach fosters a supportive environment conducive to addressing mental health challenges while promoting individual dignity and agency.
Foundations of Community Mental Health Programs
Central to the success of community-based interventions is the...
Foundations of Community Mental Health Programs
Central to the success of community-based interventions is the...
33
01:29Intellectual Disability
38
Intellectual disability (ID) is a neurodevelopmental condition characterized by deficits in intellectual and adaptive functioning that manifest during the developmental period. This condition encompasses challenges in reasoning, memory, problem-solving, and learning, accompanied by impairments in everyday life skills, such as communication, self-care, and social interactions. Intellectual disability affects approximately 1% of the population in the United States, impacting an estimated 5...
38