A new national infrastructure, the ABOARD Cohort, has been established to comprehensively monitor the progression of Alzheimer’s disease and related dementias, engaging over 10,000 participants across the country.
Study Design and Objectives
The ABOARD Cohort employs a participant-centered approach to data collection, utilizing patient-reported outcome measures alongside essential medical data. Individuals at risk of ADRD are recruited directly without requiring a doctor’s referral, allowing for fully online informed consent and annual PROMs submissions. This initiative integrates multiple data sources and actively involves stakeholders through participant panels and data access committees to guide project development and data utilization.
Participant Engagement and Inferences
- High engagement rates indicate strong participant commitment to the study
- Direct recruitment strategies streamline the enrollment process
- Data linkage enhances the depth and applicability of research findings
Since becoming operational in January 2023, the ABOARD Cohort has enrolled 10,275 participants, averaging 66.1 years of age with a 70% female representation, along with 1,383 study partners. More than 90% of participants agreed to link their data with existing sources. Those who consulted a doctor for memory concerns reported significantly worse outcomes in mental health, cognition, quality of life, and lifestyle factors compared to participants without such consultations.
The establishment of the ABOARD Cohort serves as a comprehensive national framework for studying ADRD trajectories. By centralizing data sources and prioritizing participant involvement, the cohort facilitates extensive research efforts and supports the deployment of healthcare innovations on a nationwide scale.
The ABOARD Cohort offers valuable insights into the long-term progression of Alzheimer’s, potentially influencing future research directions and policy-making. Researchers and healthcare providers can leverage this data to develop targeted interventions, improve patient care strategies, and ultimately enhance the quality of life for individuals affected by ADRD.
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