Collaborative Effort Between Academia and Healthcare to Research Dementias in Chile

Original article: Tema país: Mundo académico y hospitalario se unen para investigar las demencias en Chile

An interoperable, ethical, and sustainable registry aimed at enhancing biomedical research and continual improvement of clinical care in the seven Memory Units of public hospitals across the country is the main objective of the REMEMVER project (Red Memoria Viva Electronic Registry), officially presented at the Hospital del Salvador.

This project collaboratively brings together the Faculty of Medicine at the University of Chile in partnership with the Faculty of Engineering at the University of Concepción, along with the Memory Units from Salvador, San Borja Arriarán, San José, Concepción, Valdivia, Temuco, and Chiloé hospitals.

Rector Rosa Devés of the University of Chile highlighted the significance of this initiative: «The Rememver Project is a remarkable example of how science, public health, and engineering can converge to generate knowledge and well-being,» she emphasized.

«Building on the experience of the Center for Memory and Neuropsychiatry under the leadership of Dr. Andrea Slachevsky, and in cooperation with the information technology and electronics units at the University of Concepción, it integrates the efforts of seven Memory Units and their communities. By utilizing real-world data, we can contribute to a deeper understanding of Alzheimer’s and the care of those affected, alongside their families and communities. This represents a significant advancement and a source of pride for Chilean science and public health,» added Rector Devés.

Specifically, the project includes a national platform for real-world clinical data (Real World Data) focused on studying and monitoring dementias, marking a noteworthy advancement in enhancing public health care and generating evidence.

From the University of Concepción, Vice-Rector Paulina Rincón stated that this initiative is a crucial step, noting that one of the country’s most urgent challenges is population aging. «This approach considers a multidimensional and multidisciplinary perspective to tackle this human, social, and community phenomenon, along with the importance of being sensitive to the territorial diversity of Chile,» she remarked.

The project is funded by the Alzheimer’s Association under the international Global Real-World Data Platforms program, positioning Chile as the first Latin American country to join this global network.

«We strongly believe that this initiative will generate sufficient data to impact public policies on dementias in our country,» commented Jorge Zajjur, director of the Hospital del Salvador.

The Use and Value of Data

One of the key innovations and utilities of the Rememver project is the clinical and technical harmonization process that standardizes diagnostic criteria, complementary neuropsychological evaluations, occupational therapy, speech-language therapy assessments, and neuroimaging protocols across the country’s Memory Units.

Based on these standards, professionals involved in the project will publish the National Manual of Operational Procedures (POE), which consolidates a common framework for the assessment and documentation of dementias.

Moreover, this data will be made available on an interoperable platform for real-world data (Real World Data, RWD) that integrates clinical information from electronic hospital records (Clinical Electronic Records, RCE) and specific dementia information not previously included.

This framework shapes a national network of Memory Units that integrates science, health, and territory, strengthening regional capabilities and promoting applied research beyond the capital, emphasized the Rememver team.

Also, the initiative highlighted its inclusive approach by integrating data from urban, rural, migrating, and indigenous communities, which promotes a scientific perspective more representative of Chilean and Latin American realities.

This diversity will enable the design of evidence-based policies that close territorial and social gaps in dementia care,» they concluded.

El Ciudadano