Introduction

The REMEMVER Network. A collaborative public initiative funded by the Alzheimer’s Association, aimed at standardizing dementia care practices and developing a Real-World Data (RWD) registry for dementia in Chile.

7 of 7 Hospitals in REMEMVER use different Electronic Health Records (EHR), Radiology Information Systems (RIS/PACS), and Lab systems (LIS). There is no common syntactic or semantic standard to anotate patient record or follow-up. 

Methods

Integration of: EHR, REDCap-based dementia registry capturing routine clinical encounters, and XNAT medical imaging platform. 

The platform architecture consists of a federated architecture. Local platforms handle sensitive information, while central instances handle only pseudonymized information.

Key processes: (i) EHR to local REDCap, (ii) Text analysis + pseudonymization, (iii) image defacing.

Data harmonization aligns with local and international initiatives: ADNI, GAAIN, and follows FAIR principles.

Results

After 9 months, we have partially implemented the proposed methodology in 2 centers: the largest memory center in Chile (Hospital Salvador, Santiago), and a major regional hospital (Valdivia). 

Key findings:

Conclusion

REMEMVER is establishing the first RWD platform for dementia in Latin America, generating multimodal, harmonized, and internationally aligned data from a diverse and underserved population.

The platform will serve as a scalable model for expansion to other Latin American countries.