Building national patient registries in Mexico: insights from the MexOMICS Consortium.

IF 3.2 Q1 HEALTH CARE SCIENCES & SERVICES Frontiers in digital health Pub Date : 2024-06-04 eCollection Date: 2024-01-01 DOI:10.3389/fdgth.2024.1344103
Paula Reyes-Pérez, Ana Laura Hernández-Ledesma, Talía V Román-López, Brisa García-Vilchis, Diego Ramírez-González, Alejandra Lázaro-Figueroa, Domingo Martinez, Victor Flores-Ocampo, Ian M Espinosa-Méndez, Lizbet Tinajero-Nieto, Angélica Peña-Ayala, Eugenia Morelos-Figaredo, Carlos M Guerra-Galicia, Estefania Torres-Valdez, María Vanessa Gordillo-Huerta, Nadia A Gandarilla-Martínez, Karla Salinas-Barboza, Guillermo Félix-Rodríguez, Gabriel Frontana-Vázquez, Yamil Matuk-Pérez, Ingrid Estrada-Bellmann, Deshiré Alpizar-Rodríguez, Mayela Rodríguez-Violante, Miguel E Rentería, Alejandra E Ruíz-Contreras, Sarael Alcauter, Alejandra Medina-Rivera
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Abstract

Objective: To introduce MexOMICS, a Mexican Consortium focused on establishing electronic databases to collect, cross-reference, and share health-related and omics data on the Mexican population.

Methods: Since 2019, the MexOMICS Consortium has established three electronic-based registries: the Mexican Twin Registry (TwinsMX), Mexican Lupus Registry (LupusRGMX), and the Mexican Parkinson's Research Network (MEX-PD), designed and implemented using the Research Electronic Data Capture web-based application. Participants were enrolled through voluntary participation and on-site engagement with medical specialists. We also acquired DNA samples and Magnetic Resonance Imaging scans in subsets of participants.

Results: The registries have successfully enrolled a large number of participants from a variety of regions within Mexico: TwinsMX (n = 2,915), LupusRGMX (n = 1,761) and MEX-PD (n = 750). In addition to sociodemographic, psychosocial, and clinical data, MexOMICS has collected DNA samples to study the genetic biomarkers across the three registries. Cognitive function has been assessed with the Montreal Cognitive Assessment in a subset of 376 MEX-PD participants. Furthermore, a subset of 267 twins have participated in cognitive evaluations with the Creyos platform and in MRI sessions acquiring structural, functional, and spectroscopy brain imaging; comparable evaluations are planned for LupusRGMX and MEX-PD.

Conclusions: The MexOMICS registries offer a valuable repository of information concerning the potential interplay of genetic and environmental factors in health conditions among the Mexican population.

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在墨西哥建立国家病人登记处:MexOMICS 联合会的见解。
目的:介绍 MexOMICS:介绍 MexOMICS,这是一个墨西哥联合会,致力于建立电子数据库,以收集、交叉引用和共享墨西哥人口的健康相关数据和 omics 数据:自 2019 年以来,MexOMICS 联合会已建立了三个电子登记处:墨西哥双胞胎登记处(TwinsMX)、墨西哥狼疮登记处(LupusRGMX)和墨西哥帕金森病研究网络(MEX-PD)。参与者通过自愿参与和与医学专家的现场接触进行登记。我们还采集了部分参与者的DNA样本和磁共振成像扫描结果:结果:登记处成功登记了来自墨西哥不同地区的大量参与者:TwinsMX (n = 2,915), LupusRGMX (n = 1,761) 和 MEX-PD (n = 750)。除了社会人口、社会心理和临床数据外,MexOMICS 还收集了 DNA 样本,以研究这三个登记处的基因生物标志物。对 376 名 MEX-PD 参与者的认知功能进行了蒙特利尔认知评估。此外,267 对双胞胎参加了 Creyos 平台的认知评估,并参加了核磁共振成像会议,获得了大脑结构、功能和光谱成像;狼疮 RGMX 和 MEX-PD 也计划进行类似的评估:MexOMICS 登记为研究墨西哥人口健康状况中遗传和环境因素的潜在相互作用提供了一个宝贵的信息库。
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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