Real world Outcomes across the AD spectrum for better care: Multi-modal data Access Platform
As the result of an ageing population, rising costs and more specialised treatments, Europe is now facing an acute healthcare challenge. In no area is this more apparent than in Alzheimer’s disease (AD) and dementia. Real world evidence (RWE) integrates available patient outcome data, eliciting consensual and reliable indicators to provide an enriched clinical and health policy decision-making environment. It has the potential to better inform regulators on matters of efficacy and safety, providers on cost effectiveness, industry on pricing and manufacturing and scientists on mechanisms and pathways, to accelerate decision-making on re-purposing current treatments and developing new treatments.
The aim of ROADMAP is to provide the foundation for a Europe-wide RWE (real world evidence) platform on AD. The basis for this platform will be a series of scalable, transferable data integration methods and tools for patient outcomes, developed and tested through pilot projects. In parallel, ROADMAP will develop tools for stakeholder engagement, understanding the ELSI context and health economics impact of a RWE approach in AD.
ROADMAP, led by the University of Oxford, has been designed to combine active participation of stakeholder representatives with exemplar pilot exercises in different settings that allow the identification of the opportunities and threats for widespread adoption of RWE and to enhance clinical and health policy decision-making in AD.
It also addresses the challenge of how to best inform clinical and health policy decisions by conceptualising the entire population as the decision-making laboratory and building a population-based integrated data environment which is optimised for precision and personalised medicine. By developing tools enabling this laboratory to conduct hypothesis specific in-silico experiments, ROADMAP provides a context for identifying and addressing the many unknown challenges of AD. In this process, the interests of healthcare providers, industry, regulators, payers, patients and governments can be addressed transparently, leading to shared best practice, greater efficiency and responsiveness to increasingly fine-grained healthcare questions.
The ROADMAP Consortium brings together world-leading experts to apply cutting-edge technology to a body of data of unprecedented depth and breadth, drawn from 6 EU Member States (Denmark, France, Netherlands, Spain, Sweden, UK), involving 75 national databases and clinical registries, more than 40 cohorts, several studies and 5 dementia-relevant trials, providing a unique opportunity for RWE in general, as well as in the dementia context.