2024 Alzheimer’s Association Funding Program for Global Real-World Data Platforms (ALZ-RWD)
The ABOARD Cohort: Collecting Real-World Data to Advance Alzheimer’s Research in the Netherlands
How can real-world data be leveraged to develop personalized approaches to Alzheimer’s treatment?
Wiesje van der Flier, Ph.D.
Amsterdam UMC – Alzheimer Center Amsterdam
Amsterdam, Netherlands
Background
Research shows that Alzheimer’s develops progressively over the course of decades. Dr. Wiesje van der Flier and colleagues believe that early intervention (before clinical symptoms impact daily activities), as well as taking differences between patients into account, may be key to stopping Alzheimer’s before cognitive decline worsens.
ABOARD (A Personalized Medicine Approach for Alzheimer’s Disease) is a large-scale Dutch research project consisting of many related, yet independent, sub-projects, all contributing to the goal of personalized diagnostics, prediction, and prevention of Alzheimer’s. An important part of the ABOARD project is the establishment of a national, patient-centered data collection infrastructure, known as the ABOARD Cohort. The aim of the ABOARD Cohort is to engage participants with or at risk for Alzheimer’s in research in order to study Alzheimer’s trajectories in a real-world sample.
Research Plan
Dr. van der Flier and colleagues will work with the ABOARD Cohort to create a real-world data platform that includes all relevant stakeholders in the research process (i.e., study participants, clinical researchers, healthcare professionals and institutions, and policy makers). To scale up platform accessibility, the researchers will develop recruitment campaigns and materials, specifically focusing on reaching currently underrepresented ethnic groups in the Netherlands. Next, the team will strengthen platform infrastructure to facilitate collection of different types of real-world data, including developing a protocol for banking biological samples and implementing a brain imaging archive.
Finally, Dr. van der Flier and team will optimize the use of the current platform for healthcare institutions and individual researchers and clinicians. This will include the development of an educational platform (ABOARD Academy) aimed at both healthcare professionals and the general public. The researchers will also work towards using the ABOARD Cohort platform to run a multi-center diagnostic study and prepare for a disease-modifying treatment study.
Impact
The results of this study may inform future development of personalized medicine approaches and individual-based therapies for Alzheimer’s.