# Dementia Data Landscape 1. Cohorts

## TL;DR

This paper maps global dementia research cohorts to improve data reuse and highlights gaps in representation and metadata quality.

## Contribution

A comprehensive dementia cohort landscape and an online tool for strategic data discovery and reuse.

## Key findings

- 883 dementia-related cohorts were identified globally, with 558 population and 325 clinical.
- The Global South is substantially underrepresented in dementia data.
- Only 45% of cohorts are discoverable via existing data platforms.

## Abstract

Understanding and maximizing complex health data is crucial for accelerating discovery, translational research, funding priorities, and improving data management. Rapid, cost‐effective progress can be made by repurposing datasets. This work explores the dementia cohort landscape, identifies cohorts relevant to dementia translation, and highlights areas to strengthen health cohort infrastructure.

PubMed was searched for publications utilizing dementia‐related cohorts (1970–2024), supplemented by international dementia data platforms. A template aligned with the C‐Surv data model was used to summarize administrative details and the presence of measurements across 17 themes.

From 4596 publications and 11 data platforms, 883 cohorts were identified (558 population and 325 clinical). Of these, 74% indicated data availability for future research, though metadata reporting varied. Cohort metadata are accessible via the landscape tool.

This work reveals extensive global dementia‐related data for repurposing and identifies priority areas for improvement, including metadata transparency, data accessibility, and locations to prioritize for future research.

A total of 883 cohorts were identified globally (1970 to 2024): 558 population and 325 clinicalThe Global South is substantially underrepresentedSeventy‐four percent of cohorts offer data access, but protocols and metadata quality vary widelyOnly 45% of cohorts were discoverable via existing data platformsThe online landscape tool enables strategic discovery and reuse of dementia data

A total of 883 cohorts were identified globally (1970 to 2024): 558 population and 325 clinical

The Global South is substantially underrepresented

Seventy‐four percent of cohorts offer data access, but protocols and metadata quality vary widely

Only 45% of cohorts were discoverable via existing data platforms

The online landscape tool enables strategic discovery and reuse of dementia data