公共卫生 公共卫生
Jacqueline Pontes Monteiro1, Hannatu Amaza2, Isabella Hoang2
1Wisconsin Alzheimer's Disease Research Center, School of Medicine and Public Health, Madison, WI, USA.
阿尔茨海默病神经成像计划 (ADNI4) 成功使用了社区参与研究 (CER) 模式,以促进参与者的参与并提高研究概括性. 这种方法增强了来自不同背景的招聘,超过了更广泛的数据表示的最初目标.
科学领域:
- 神经科学和衰老研究研究
- 临床试验方法论 临床试验方法论
- 基于社区的参与式研究
背景情况:
- 确保阿尔茨海默氏症神经成像计划 (ADNI) 数据的可通用性对于推进研究至关重要.
- 在ADNI4参与核心利用多方面的社区参与研究 (CER) 模式,以加强参与者的参与.
- 本研究通过注册更新来评估CER模型的初步有效性.
研究的目的:
- 在ADNI4中实施和评估一个社区参与研究 (CER) 模型,以提高参与者的参与度.
- 通过吸引多样化的群体来提高ADNI研究数据的概括性.
- 评估特定的CER战略的有效性,包括与社区组织 (CBOs) 建立伙伴关系,以及部署社区研究联络 (CRLs) 和社区研究导航 (CRNs).
主要方法:
- 一个CER模型优先考虑与CBOs和参与者在所有ADNI4阶段建立信任,共同学习和权力共享.
- 与"枢纽网站"合作,为参与者参与提供支持,包括专门的CRL.
- 从CRN通过电话,电子邮件和聊天提供远程支持,以满足参与者的需求并建立关系.
主要成果:
- 截至2025年1月,10个中心站点,6个CRL和6个CRN活跃,参与了85个CBO,并通过101个社区活动接触了7,994个人.
- CRN管理了3,124个通信,主要是针对血液生物标志物,招生和与研究相关的询问.
- 10个中心站点,约占ADNI站点的20%,在新的临床入学者中贡献了约50%的改善概括性.
结论:
- ADNI4已经成功地在全国范围内扩展了一个全面的CER模型,证明了参与者的参与度和普遍性增加.
- 实施的战略,专注于信任和长期社区伙伴关系,超过了研究目标.
- 这种方法提供了一个可复制和可扩展的模型,用于在阿尔茨海默氏症和相关痴呆症 (AD/ADRD) 领域生成更可概括的数据.
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