The Rewards and Challenges of Constructing Patient Registries in Mexico
1Alejandra Medina-Rivera (Universidad Nacional Autónoma de México)
https://simons.berkeley.edu/talks/rewards-and-challenges-constructing-patient-registries-mexico
Computational Challenges in Very Large-Scale 'Omics'
Electronic Health Record Information Systems set the mechanisms to record, exchange and consolidate information, however, the diversity of electronic clinical records and database storage systems in Mexico greatly hinders data sharing for research. This is one of the main challenges for Large Scale Omics projects in the country, as each hospital, insurance service (private, public, military), and region will have their own electronic system that can also change across administrations. Patient registries are an essential tool in public health research, by providing population-based information for understanding disease etiology, course, incidence and to evaluate treatments, life quality and assess patients needs, among others. In past years, patient registries independent of the government health systems have been established in Mexico with valuable results. In particular, we launched three nationwide registries in order to retrieve epidemiological and genetic information of twins (TwinsMX), people with Systemic Lupus Erythematosus (Lupus RGMX) and patients with Parkinson Disease (MEX-PD). These are designed to obtain data from electronic questionnaires and genetic testing and aim to expand our knowledge of the phenotypic and genetics of these traits in admixed populations. In the case of TwinsMX and LupusRGMX participants are mainly recruited through social media, while MEX-PD requires patients to be registered by their neurologists. Surveys are available on web-based application Research Electronic Data Capture (REDCap), which allows secure capture and storage of data, and most surveys are shared across registries to facilitate data integration for future projects. For all registries the participation of patient communities is key for the advancement of the registries, we strongly believe that the participants are not subjects of study, but active citizens with a major role in biomedical research. TwinsMX, Lupus RGMX and MEX-PD will allow us to characterize the genetic and environmental contribution over different traits and diseases with data directly collected in the Mexican population (which is heavily underrepresented in epidemiological studies). This characterization will provide relevant information that could in the future be useful to guide research to improve treatments.