Public-Private Partnership launches 3-dimensional landscape of European data availability for Alzheimer’s disease research
Funded through the Innovative Medicines Initiative, the public-private ROADMAP project brought together 26 organisations led by Novartis and coordinated by the University of Oxford. One of the partnership’s main aspirations was to support the identification and integration of real-world data across multiple sources and countries. Through that, it intended to support opportunities for the development of evidence for the reimbursement and access of new technologies for the treatment of AD, ultimately aiming to drive healthcare systems towards better care and data capture. The consortium therefore collaboratively developed this 3D ‘heat map’ assessment. It allows the visualisation of the different data sources and how they are able to capture different AD-outcomes together with their relevance for the different disease stages. Users can switch between the perspectives of people with dementia, carers and health professionals. Enabling the visualisation of the AD-related data availability in different types of European data sources and the intrinsic gaps has proven to be a powerful tool for the design, planning and validation of the models and strategies used to guide future recommendations to enhance AD research. Through these efforts, ROADMAP helps address the challenge of how best to inform clinical and health-policy decisions by studying how to build a population-based integrated data environment and enabling its visualisation. The online version of the Data Cube (best viewed in Google Chrome) is available here: https://datacube.roadmap-alzheimer.org “The Data Cube is an important outcome of the ROADMAP project as it provides a much needed, overarching picture of priority outcomes, across the disease stages, and whether data is available. It helps to identify gaps in the evidence and provides a useful tool for regulatory and HTA purposes.” Dr Jacoline Bouvy, Senior Scientific Adviser, National Institute for Health and Care Excellence (NICE). “For scientists and researchers, the Data Cube is a unique way to view available outcomes data and identify useful data sources for disease modelling as well as opportunities for further research in the evidence gaps identified.” Dr Catherine Reed, Principal Research Scientist, Eli Lilly and Company. About the Innovative Medicines Initiative The Innovative Medicines Initiative (IMI) is Europe's largest public-private initiative aiming to speed up the development of better and safer medicines for patients. IMI supports collaborative research projects and builds networks of industrial and academic experts in order to boost pharmaceutical innovation in Europe. IMI is a joint undertaking between the European Union and the European Federation of Pharmaceutical Industries and Associations, EFPIA. More information can be found at www.imi.europa.eu Acknowledgment This project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under Grant Agreement No 116020 (“ROADMAP”). This Joint Undertaking receives support from the European Union’s Horizon 2020 Research and Innovation Programme and EFPIA. Disclaimer This communication solely reflects the consortium’s view and that neither IMI nor the European Union, EFPIA, or any Associated Partners are responsible for any use that may be made of the information contained herein. Contacts: For further information, please contact: Glòria Garcia-Negredo (SYNAPSE) datacube@roadmap-alzheimer.org info@roadmap-alzheimer.org For more information on ROADMAP visit: https://www.roadmap-alzheimer.org
Keywords
Alzheimer’s disease, data sharing, data systems, patient outcome assessment, real-world clinical trials, systems integration, Data cube, real-world evidence, Health Technology Assessment, Electronic Health Records, Outcomes