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Primary Healthcare Services01:30

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Public Health.

Casper de Boer1,2, Hanneke F M Rhodius- Meester1,3,4, Sophie M van der Landen1,2

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Summary

The ABOARD Cohort is a new Dutch infrastructure collecting patient data to study Alzheimer's disease (AD) trajectories. It aims to improve prediction models and support healthcare innovations for better patient outcomes.

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Area of Science:

  • Neuroscience
  • Gerontology
  • Public Health

Background:

  • Alzheimer's disease (AD) develops over decades, yet current data collection often misses the full disease course.
  • Existing prediction models for AD may not reflect real-world patient experiences.
  • A national data infrastructure is needed to capture the complete AD trajectory and improve patient-relevant outcomes.

Purpose of the Study:

  • To establish the ABOARD Cohort, a Dutch national data infrastructure for studying Alzheimer's disease (AD).
  • To collect patient-reported outcome measures (PROMs) and medical data to understand the AD disease trajectory.
  • To link collected data with existing registries and serve as a platform for healthcare innovation.

Main Methods:

  • The ABOARD Cohort utilizes a participant-centered approach, collecting PROMs and minimal case report forms (CRFs) online.
  • Participants at risk of or with AD, along with their study partners, are recruited directly.
  • Data linkage with existing registries is facilitated, and stakeholder input guides project development.

Main Results:

  • The ABOARD Cohort enrolled 10,275 participants and 1,383 partners by October 2024.
  • Over 90% of participants consented to data linkage with existing registries.
  • Participants reporting memory problems showed worse outcomes on PROMs for mental health, cognition, quality of life, and lifestyle.

Conclusions:

  • The ABOARD Cohort provides a national infrastructure for studying AD trajectories with participant involvement.
  • This infrastructure can serve as a registry to advance AD research and provide real-world data for evaluating new therapies.
  • The project aims to improve understanding and management of AD by focusing on patient-reported outcomes and comprehensive data linkage.