The health care challenge facing Europe of an ageing population, rising costs, and more specialised treatments is nowhere more acute than for dementia, with Alzheimer’s disease (AD) as a leading cause of this neurodegenerative condition. The European Union, with the world’s most diverse and sophisticated health care systems, is uniquely positioned to develop and exploit technologies to support the collection and use of RWE. ROADMAP has brought together 26 partners from across Europe to develop a set of consensual, priority outcomes and data integration tools related to AD, as well as specific guidelines on the handling and interpretation of RWE data.
WP2 has conducted a range of research, public involvement and review activities using a variety of sources and methods in order to define a list of priority outcomes that are of most relevance to key stakeholder groups, and to produce a disease progression and outcomes classification matrix that identifies priority outcomes at each stage of disease severity. A mixed methods analysis of the combined results of the WP2 workstreams has identified a core set of priority outcomes including:
- Functional ability and independence
- Patient quality of life
- Quality of the carer’s and family’s lives
- Behavioural and neuropsychiatric symptoms
- Cognitive abilities
The results of the analysis highlight changes in the relative prioritisation of these outcomes across the stages of disease progression and offer insights into the factors and outcome subcategories that are driving their prioritisation.
Full reports of the workstreams that informed the analysis are provided alongside this deliverable as individual appendices.