Coordinated by the University of Oxford and Novartis, the Real world outcomes across the Alzheimer’s disease (AD) spectrum for better care: Multi-modal data Access Platform (ROADMAP) project, brought together leading institutions and companies seeking to improve the lives of people with AD, culminating in a ‘Real-World data platform’ to enhance related research.

Alzheimer’s disease is on the rise in our ageing population, and new, effective treatments are urgently needed. Currently, the safety and benefits to patients of potential treatments are assessed in strictly-controlled clinical trials. However, clinical trials do not provide information on the health benefits for patients in their daily lives in the ‘real world’. The ROADMAP project delivered a series of methods and tools to allow the scalable, transferable integration of Real World Data (RWD) about patient outcomes in the real world. In addition, the project delivered tools for patient engagement, and addressed the ethical, legal and social implications (ELSI) of adopting a real world evidence approach to Alzheimer’s disease.

As part of ROADMAP, NEUROSEC led the ELSI work package; developed materials for stakeholder engagement such as surveys for patients, their carers, and health professionals in the outcomes work package; and helped to advance understanding of the ethical aspects of disease progression and outcome prioritisation across each of these areas.

Concluding in November 2018 after two years, ROADMAP was supported by the European Union’s Horizon 2020 Research and Innovation Programme, the European Federation of Pharmaceuticals Industries and Associations (EFPIA), and the Innovative Medicines Initiative (IMI). It formed part of IMI’s Big Data for Better Outcomes programme (BD4BO), which aims to facilitate the use of diverse data sources to deliver results that reflect health outcomes of treatments that are meaningful for patients, clinicians, regulators, researchers, healthcare decision-makers, and others.