Developing Topics

Alzheimers Dement. 2025 Dec;21 Suppl 7:e108395. doi: 10.1002/alz70861_108395.

ABSTRACT

BACKGROUND: Real-world Data (RWD) is key to advancing research and care on Dementia. Despite having the highest dementia prevalence and a unique and diverse population, there is no dementia registry in Latin America (LA), where the lack of well-developed specialty centers is a critical barrier to its development. In Chile, a nationwide network of public dementia centers has been implemented, however, despite all of them using electronic health record (EHR), there is no standardized system to integrate the collected data, which limits clinical decision-making, research, and policy development. To address this challenge, we propose implementing LA´s first dementia RWD platform, "Red Memoria Viva Electronic Registry" (REMEMVER).

METHOD: Building upon an already existing RWD Registry piloted at the Hospital del Salvador, REMEMVER will expand data integration across seven Chilean dementia centers (Figure 1). Through this project, we plan to standardize clinical, neuropsychological and neuroimaging evaluations; harmonize the collected data aligning with international initiatives (ADNI-GAIN); develop and implement a RWD platform and establish a dissemination strategy fostering international collaboration. The collected information (table 1) will be recorded in local and central RWD platforms using customized Research Electronic Data Capture (REDCap) instances at the University of Chile, after stablishing automatic integration of the local EHR with the platform. To ensure reliable and standardized data collection across centers, we will develop a hybrid training program to prepare personnel to follow harmonized procedures.

RESULTS: Currently, 5,796 patients have been assessed at the seven participating dementia centers, which supports the institutions capacity to implement the project (Figure 1). We expect that the REMEMVER platform will enhance data standardization and interoperability among healthcare institutions, improve clinical efficiency by reducing waiting times and optimizing patient care-pathways, and improve Chile's capacity for dementia research by providing high-quality, real-world patient data for epidemiological studies, risk factor analysis, and treatment outcome evaluation.

CONCLUSION: Through REMEMVER, Chile aims to create a sustainable, regionally integrated RWD platform that enhances dementia care, supports research, informs public health policy and contributes to advancing health equity. This initiative will contribute to global efforts in dementia research by providing unique insights into real-world patient trajectories in Latin America.

PMID:41433597 | DOI:10.1002/alz70861_108395