Cohort Profile: The Ontario HIV Treatment Network Cohort Study (OCS)

Cohort Profile: The Ontario HIV Treatment Network Cohort Study (OCS)
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DOI:
10.1093/ije/dyr230
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发表时间:
2013-04-01
影响因子:
7.7
通讯作者:
Rachlis, Anita
Rachlis, Anita
中科院分区:
医学1区
文献类型:
--
作者:
Rourke, Sean B.;Gardner, Sandra;Rachlis, Anita

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安大略艾滋病毒治疗网络队列研究(OCS)是一项观察性开放动态队列研究,研究对象是加拿大安大略因感染人类免疫缺陷病毒(HIV)而接受医疗护理的人群。OCS成立于20世纪90年代中期,其根源在于艾滋病活动家对研究的需求,这些研究将提高艾滋病毒感染者的生活质量,同时尊重他们的隐私。这是一项合作和社区驱动的研究,包括一个由艾滋病毒感染者和其他利益攸关方组成的治理委员会,负责评估分析项目提案的社区相关性和道德。从1995年到2010年,共招募了5644名参与者,累计观察了27720人年;随访将至少持续到2015年。在最初几年的研究中,重点是来自医疗图表审查的临床数据。它已发展成为一项综合性研究,收集广泛的去识别信息的临床,实验室和心理社会和行为措施的基础上,医疗图表摘要,访谈使用标准化的问卷调查和链接与外部行政卫生数据库在安大略。鼓励感兴趣的合作者按照研究网站(www.ohtncohortstudy.ca)上的说明提交分析项目提案。
The Ontario HIV Treatment Network Cohort Study (OCS) is an observational, open dynamic cohort of people who are receiving medical care for human immunodeficiency virus (HIV) infection in Ontario, Canada. Established in the mid-1990s, the OCS has its roots in AIDS activists' demands for research that would improve the quality of life of people living with HIV while respecting their privacy. It is a collaborative and community-driven study, including a Governance Committee made up of people with HIV and other stakeholders that evaluates analysis project proposals for community relevance and ethics. From 1995 to 2010, a total of 5644 participants were enrolled and 27 720 person-years of observation were accumulated; follow-up will continue until at least 2015. In the initial years of study, the focus was on clinical data from medical chart reviews. It has since evolved into a comprehensive study that collects extensive de-identified information on clinical, laboratory and psychosocial and behavioural measures based on medical chart abstractions, interviews using a standardized questionnaire and linkage with external administrative health databases in Ontario. Interested collaborators are encouraged to submit analysis project proposals as instructed on the study website (www.ohtncohortstudy.ca).