Real world outcomes across the AD spectrum for better care: multi-modal data access platform


Start Date
End Date
IMI2 - Call 6
Grant agreement number

Type of Action: 
RIA (Research and Innovation Action)

IMI Funding
3 998 250
EFPIA in kind
4 210 843
1 288
Total Cost
8 210 381


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 aims to deliver a series of methods and tools that will allow the scalable, transferable integration of data on patient outcomes in the real world. The tools will be developed and tested through pilot projects and will lay the foundations for a Europe-wide platform on real world evidence in Alzheimer’s disease. The project will also deliver tools for patient engagement and address the ethical, legal and social implications of adopting a real world evidence approach to Alzheimer’s disease.

The project is part of IMI’s Big Data for Better Outcomes programme, 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.

Achievements & News

ROADMAP Data Cube allows interactive visualisation of Alzheimer’s data
May 2019

IMI’s ROADMAP project has released its Data Cube, an online, three-dimensional ‘heat map’ that allows users to visualise how different data sources capture different Alzheimer’s disease outcomes at different disease stages. Furthermore, users can switch between the perspectives of people with dementia, carers, and health professionals. ###The Data Cube makes it easy to see what data sources are available, and where there are gaps. It comprises information from 65 data sources, including electronic health records, clinical trials, and cohorts, but does not provide access to any underlying data. According to the project, ‘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.’ ROADMAP is part of IMI’s Big Data for Better Outcomes programme.

Contribute to ROADMAP’s survey on outcomes in dementia
February 2018

The ROADMAP project has launched a survey with the goal of obtaining views on the importance of different aspects that relate to mild cognitive impairment and dementia to assess meaningful change in disease progression. ### The overall aim of ROADMAP is to effectively use Europe wide real world evidence (RWE) data to improve the lives of people with dementia, with a particular focus on Alzheimer’s disease, and to prevent individuals from developing the disease. The project team would like people with dementia, their carers, clinicians, scientists, payers, health economists, and others concerned with dementia in their professional capacity, to complete the surveys as they are interested in identifying important aspects of dementia from multiple perspectives. Aspects of having dementia that they are interested in include: cognition, independence in complex daily activities, the use of health and social services, quality of life, and the quality of carers’ and families’ lives. The deadline for completing the survey is 5 March.

Participants Show participants on map

EFPIA companies
  • Ac Immune SA, Lausanne, Switzerland
  • Biogen Idec Limited, Maidenhead, Berkshire, United Kingdom
  • Eli Lilly and Company Limited, Basingstoke, United Kingdom
  • F. Hoffmann-La Roche AG, Basel, Switzerland
  • Ge Healthcare Limited, Little Chalfont, United Kingdom
  • H. Lundbeck As, Valby, Denmark
  • Janssen Pharmaceutica Nv, Beerse, Belgium
  • Novartis Pharma AG, Basel, Switzerland
  • Takeda Development Centre Europe LTD, London, United Kingdom
Universities, research organisations, public bodies, non-profit groups
  • Aarhus Universitet, Aarhus C, Denmark
  • Academisch Ziekenhuis Leiden, Leiden, Netherlands
  • Agentschap College Ter Beoordeling Van Geneesmiddelen, Utrecht, Netherlands
  • Chu Hopitaux De Bordeaux, Talence, France
  • Erasmus Universitair Medisch Centrum Rotterdam, Rotterdam, Netherlands
  • Fundacio Institut Universitari Pera La Recerca A L'Atencio Primaria De Salut Jordi Gol I Gurina, Barcelona, Spain
  • Goeteborgs Universitet, Gothenburg, Sweden
  • Kobenhavns Universitet, Copenhagen, Denmark
  • London School Of Economics And Political Science, London, United Kingdom
  • National Institute For Health And Care Excellence, Manchester, United Kingdom
  • Rijksuniversiteit Groningen, Groningen, Netherlands
  • The University Of Edinburgh, Edinburgh, United Kingdom
  • Universiteit Maastricht, Maastricht, Netherlands
  • University of Oxford, Oxford, United Kingdom
Small and medium-sized enterprises (SMEs) and mid-sized companies (<€500 m turnover)
  • Alzheimer Europe, Luxembourg, Luxembourg
  • Ixico Technologies Limited, London, United Kingdom
  • Synapse Research Management Partners SL, Barcelona, Spain
Project contact
Project leader
Frédéric De Reydet De Vulpillieres