Project: Alzheimer’s disease data-driven insights on individual outcomes of importance

Acronym ADDITION (Reference Number: HESOCARE-329-074)
Duration 01/01/2019 - 31/12/2022
Project Topic In Alzheimer’s disease (AD), accurately forecasting disease progression and its long-term consequences is fundamental for care planning and resource allocation both at the individual and societal (macro) level. ADDITION aims to answer the following research questions: 1) what are the disease trajectories, care pathways and time to key events for an individual with AD, and which factors influence these developments? 2) What is the cost-effectiveness, economic and societal impact of interventions aimed at improving care outcomes (today) and changing the course of disease (tomorrow)? ADDITION will integrate data from existing cohorts and registries from Sweden, France and the Netherlands on disease progression from preclinical AD, via MCI to AD dementia. We will jointly collect novel linked data on quality of life, autonomy and caregiver burden, taking care to use the same methodology resulting in maximally harmonized data. This database will be leveraged to identify milestones of relevance to patients and caregivers, and to predict the individual trajectories to these events through a combination of statistical modeling and machine learning methods. In addition to health outcomes (dementia onset, death), we will focus on outcomes of key importance to patients and caregivers (autonomy, dignity, quality of life). Subsequently, we will take the prediction model as a starting point to simulate and evaluate the cost-effectiveness of different interventions aimed at improving short- and long-term outcomes, including lifestyle modification, care strategies and future interventions aimed to alter the disease course, such as disease-modifying pharmacological treatment. If successful, results from ADDITION will contribute to strengthening patient competence in decision-making by providing accurate prognostic information across the entire disease course, and to enabling rational societal decisions on new preventive, therapeutic and care strategies for AD.
Call Multinational research projects on Health and Social Care for Neurodegenerative Diseases

Project partner

Number Name Role Country
1 Karolinska Institutet Coordinator Sweden
2 CIC 1401 EC, Inserm Partner France
3 Stichting VUMC Partner Netherlands
4 Slovak Academy of Sciences Partner Slovak Republic