通过开发合作数据平台,加强多站点自闭症研究。

IF 5.3 2区 医学 Q1 BEHAVIORAL SCIENCES Autism Research Pub Date : 2024-05-24 DOI:10.1002/aur.3167
Jeffrey T. Anderson, Jeffrey D. Roth, Kashia A. Rosenau, Patrick S. Dwyer, Alice A. Kuo, Julian A. Martinez-Agosto
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引用次数: 0

摘要

数据存储库,尤其是那些存储弱势群体数据的存储库,越来越需要仔细考虑不仅要收集哪些数据,还要考虑如何使用这些数据。因此,自闭症干预研究网络(AIR-P)创建了合作研究基础设施(ICR),以建立自闭症资料库数据收集实践标准。ICR 将努力鼓励网站间的合作,扩大自闭症患者的声音,并扩大数据的可访问性。国际自闭症研究计划分为三层框架,包括:(1)提案征集系统;(2)基于 REDCap 的数据存储库;(3)用于显示去标识化数据汇总的公共数据仪表板。该框架与包括自闭症和非自闭症研究人员在内的审查程序相结合,旨在推动自闭症研究的公平实施,加强研究内部和研究之间的标准化,提高研究结果的透明度和传播。此外,研究参与者可以选择加入联系人登记册,这为建立强大的参与者库奠定了基础。因此,研究人员可以利用该平台识别、接触并向更多可能符合资格标准的潜在参与者分发电子材料。通过采用促进研究人员与参与者之间有效沟通的方法,国际自闭症研究中心可以促进研究工作,既为自闭症患者着想,又使他们受益。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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Enhancing multi-site autism research through the development of a collaborative data platform

Data repositories, particularly those storing data on vulnerable populations, increasingly need to carefully consider not only what data is being collected, but how it will be used. As such, the Autism Intervention Research Network on Physical Health (AIR-P) has created the Infrastructure for Collaborative Research (ICR) to establish standards on data collection practices in Autism repositories. The ICR will strive to encourage inter-site collaboration, amplify autistic voices, and widen accessibility to data. The ICR is staged as a three-tiered framework consisting of (1) a request for proposals system, (2) a REDCap-based data repository, and (3) public data dashboards to display aggregate de-identified data. Coupled with a review process including autistic and non-autistic researchers, this framework aims to propel the implementation of equitable autism research, enhance standardization within and between studies, and boost transparency and dissemination of findings. In addition, the inclusion of a contact registry that study participants can opt into creates the base for a robust participant pool. As such, researchers can leverage the platform to identify, reach, and distribute electronic materials to a greater proportion of potential participants who likely fall within their eligibility criteria. By incorporating practices that promote effective communication between researchers and participants, the ICR can facilitate research that is both considerate of and a benefit to autistic people.

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来源期刊
Autism Research
Autism Research 医学-行为科学
CiteScore
8.00
自引率
8.50%
发文量
187
审稿时长
>12 weeks
期刊介绍: AUTISM RESEARCH will cover the developmental disorders known as Pervasive Developmental Disorders (or autism spectrum disorders – ASDs). The Journal focuses on basic genetic, neurobiological and psychological mechanisms and how these influence developmental processes in ASDs.
期刊最新文献
Issue Information Dysregulated plasma autoantibodies are associated with B cell dysfunction in young Arab children with autism spectrum disorder in Qatar 3-generation family histories of mental, neurologic, cardiometabolic, birth defect, asthma, allergy, and autoimmune conditions associated with autism: An open-source catalog of findings Issue Information A longitudinal health promotion program for autistic children and their caregivers: Impact of an urban community-based program
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