On 30 and 31 October, ROADMAPs journey during the initial Phase 1 of the project was featured at Alzheimer Europe’s 28th Conference “Making dementia a European priority” in Barcelona, Spain. This included a plenary talk by Project Coordinator, John Gallacher, as well as four parallel sessions including participants from numerous Consortium partners, representatives from the European Working Group of People With Dementia, as well as members from ROADMAPs Expert Advisory Group.
Prof. John Gallacher, Project Co-ordinator of the IMI ROADMAP project (Real world Outcomes across the Alzheimer’s Disease spectrum for better care: Multi-modal data Access Platform), closed the engaging first plenary session. He shared the work done by the project so far: The ROADMAP project has demonstrated the ability of academic, industry, patients and regulatory partners to work together on a highly complex, widely distributed, and tightly time-constrained project; established a broad-based and evidence based consensus on the priority outcomes for dementia treatment pathways; developed a comprehensive database of available European real world data; demonstrated that the current evidence base is inadequate for disease progression modelling and detailed health economic evaluation; and has made a strong case for the collection of new data that is intentionally designed to enable early detection and disease progression modelling.
- PL1.5 Gallacher John – Real world Outcomes across the AD spectrum for better care: Multimodal data Access Platform
The video of the plenary talk will shortly be available here.
The first session looked at relevant outcomes from the perspective of different stakeholders as Alzheimer’s disease (AD) and dementia progress. It also looked at how these indications were collected using a variety of methods such as literature reviews, Public Patient Involvement, pan-European surveys as well as stakeholder interviews.
- P4.1 TOCHEL Claire – Outcome definition Scope and methods
- P4.2 BINTENER Christophe & ROCHFORD-BRENNAN Helen – The involvement of the European Working Group of People with Dementia in the outcomes work of ROADMAP
- P4.3 SMITH Michael – The most important outcomes of Alzheimer’s disease and dementia
The video of the first session will shortly be available here.
ROADMAP mapped the critical ethical, legal and social issues that arise from creating a real-world evidence platform that re-uses existing health data pooled from different sources, but it also addressed ethical concerns and topics that arose during the course of the project itself. These have yielded interesting outputs and the second session was convened by the Ethical, Legal and Social Implications (ELSI) team who will provided insights on the ethical challenges in AD research and practice when using real-world data.
- P12.1 DIAZ Anna & GOODRICK Jayne -The involvement of the EWGPWD in the ethics work of ROADMAP
- P12.2 ANGEHRN Zuzanna – Ethical and social implications of using predictive modelling for Alzheimer´s disease prevention (Not public)
- P12.3 MCKEOWN Alex – Outcome Prioritisation in Alzheimer’s Disease:Understanding the Ethical Landscape
The video of the second session will shortly be available here.
Another focal point involved the third session with perspectives on real-world data in AD from regulatory and Health Technology Assessment bodies, including the prospective future data collection and further research in this area. These perspectives have been collected via ROADMAPs Expert Advisory Group, which has sought to find the weak spots as well as opportunities for the future in ROADMAPs plans.
- P20.1 O’ROURKE Diana – Regulatory and HTA perspectives on real-world data in Alzheimer’s Disease
- P20.2 XOXI Entela – Regulatory and HTA perspectives on real-world data in Alzheimer’s Disease
The video of the third session will shortly be available here.
Visualising the available AD-related data in different types of European data sources and identifying 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. Therefore, the fourth session was dedicated to focus on the presentation of steps taken during the development of ROADMAPs 3D data and outcome assessment, the “Data Cube”.
- P28.1 GARCIA Glòria – Data Cube
- P28.2 VAN DER LEI Johan – Challenges to fill in the Data Cube:Difference across data sources
- P28.3 HOTTGENROTH Antje – Real-world Data avalibilityacross Europe: What data are present, missing and heterogeneity of data collected
- P28.4 PONJOAN Anna – Data source and academic perspective on the Data Cube
The video of the fourth session will shortly be available here.
More information on the presentations including the timetable, overview of speakers and titles of presentations as well as the abstracts can be found here.