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Abstract
Longitudinal observational cohort studies are being conducted worldwide to understand cognition, biomarkers, and the health of the aging population better. Cross-cohort comparisons and networks of registries in Alzheimer’s disease (AD) foster scientific exchange, generate insights, and contribute to the evolving clinical science in AD. A scientific working group was convened with invited investigators from established cohort studies in AD, in order to form a research collaboration network as a resource to address important research questions. The Connecting Cohorts to Diminish Alzheimer’s Disease (CONCORD-AD) collaboration network was created to bring together global resources and expertise, to generate insights and improve understanding of the natural history of AD, to inform design of clinical trials in all disease stages, and to plan for optimal patient access to disease-modifying therapies once they become available. The network brings together expertise and data insights from 7 cohorts across Australia, Europe, and North America. Notably, the network includes populations recruited through memory clinics as well as population-based cohorts, representing observations from individuals across the AD spectrum. This report aims to introduce the CONCORD-AD network, providing an overview of the cohorts involved, reporting the common assessments used, and describing the key characteristics of the cohort populations. Cohort study designs and baseline population characteristics are compared, and available cognitive, functional, and neuropsychiatric symptom data, as well as the frequency of biomarker assessments, are summarized. Finally, the challenges and opportunities of cross-cohort studies in AD are discussed.
Highlights
Alzheimer’s disease (AD) is the leading cause of dementia [1]
Fifty million people worldwide were living with dementia in 2018, and this number is expected to more than triple to reach 152 million by 2050 [2]
Postponing dementia onset by even just one year could result in nine million fewer cases worldwide than predicted for 2050 [4]
Summary
Alzheimer’s disease (AD) is the leading cause of dementia [1]. It is a progressive and, as of yet, incurable neurodegenerative disease that has devastating consequences for the lives of affected individuals and their families. Fifty million people worldwide were living with dementia in 2018, and this number is expected to more than triple to reach 152 million by 2050 [2]. Dementia is a leading cause of morbidity, mortality, and disability, especially among the elderly [3]. Economic estimates have suggested the total annual cost of dementia worldwide was approximately 1 trillion US dollars in 2018, and this cost is expected to double by 2030 [2]. Postponing dementia onset by even just one year could result in nine million fewer cases worldwide than predicted for 2050 [4]
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