Carrillo-Larco Rodrigo M, Hambleton Ian R
Hubert Department of Global Health Rollins School of Public Health Emory University Atlanta, GA United States of America Hubert Department of Global Health, Rollins School of Public Health, Emory University, Atlanta, GA, United States of America.
The University of the West Indies at Cave Hill Bridgetown, Saint Michael Barbados The University of the West Indies at Cave Hill, Bridgetown, Saint Michael, Barbados.
Rev Panam Salud Publica. 2024 Dec 16;48:e59. doi: 10.26633/RPSP.2024.59. eCollection 2024.
We describe the daily operations of the Cohorts Consortium of Latin America and the Caribbean (CC-LAC), detailing the resources required and offering tips to Caribbean researchers so this guide can be used to start a data pooling project.
The CC-LAC began by developing a steering committee - that is, a team of regional experts who guided the project's set up and operations. The Consortium invites investigators who agree to share individual-level data about topics of interest to become members and they then have input into the project's goals and operations; they are also invited to coauthor papers. We used a systematic review methodology to identify investigators with data resources aligned with the project and developed a protocol (i.e. a manual of procedures) to document all aspects of the project's operations.
If a study recruited people from more than one country, then the sample from each country was counted as a separate cohort, thus in 2024 our combined data resources include >30 separate units from 13 countries, with a combined sample size of >174 000 participants. Using this unique resource, we have produced region-specific risk estimates for cardiometabolic risk factors (e.g. anthropometrics) and cardiovascular disease, and we have developed a region-specific cardiovascular risk score for use in clinical settings.
Data pooling projects are less expensive than collecting new data, and they increase the longer-term value and impact of the data that are contributed. Data pooling efforts require systematic and transparent methodology, and expertise in data handling and analytics are prerequisites. Researchers embarking on a data pooling endeavor should understand and be able to meet the various data protection standards stipulated by national data legislation as these standards will likely vary among jurisdictions.
我们描述拉丁美洲和加勒比地区队列联盟(CC-LAC)的日常运作,详细说明所需资源,并为加勒比地区的研究人员提供建议,以便本指南可用于启动数据合并项目。
CC-LAC首先成立了一个指导委员会,即由区域专家组成的团队,负责指导项目的设立和运作。该联盟邀请同意分享有关感兴趣主题的个人层面数据的研究人员成为成员,然后他们可以参与项目目标和运作的制定;他们也被邀请共同撰写论文。我们使用系统评价方法来识别拥有与项目相关数据资源的研究人员,并制定了一份方案(即程序手册)来记录项目运作的各个方面。
如果一项研究从多个国家招募人员,那么每个国家的样本被视为一个单独的队列,因此在2024年,我们合并的数据资源包括来自13个国家的30多个独立单位,合并样本量超过174000名参与者。利用这一独特资源,我们得出了针对心血管代谢风险因素(如人体测量学)和心血管疾病的特定区域风险估计值,并开发了一种用于临床环境的特定区域心血管风险评分。
数据合并项目比收集新数据成本更低,并且增加了所贡献数据的长期价值和影响力。数据合并工作需要系统且透明的方法,数据处理和分析方面的专业知识是先决条件。开展数据合并工作的研究人员应理解并能够满足国家数据立法规定的各种数据保护标准,因为这些标准在不同司法管辖区可能会有所不同。