The PROMINENT Consortium recently convened for a General Assembly meeting from 9 to 10 November in Stockholm, Sweden, gathering representatives from 14 partner organisations. The two-day event, led by Project Coordinator Linus Jönsson from Karolinska Institutet, was a deep dive into the advancements of the project’s digital platforms and real-world evidence collection for the management of neurodegenerative disease.
Day 1 Highlights: Implementation, Evaluation, and Data Management
The day session started with an introduction of the 14 consortium partners, bringing together experts in neurodegenerative diseases and clinical neuroscience, Artificial Intelligence, Health Economics, Patient Advocacy with some of Europe’s leading medical centres for the diagnosis and treatment of cognitive disorders. Linus Jönsson opened the meeting with a review of the consortium’s strategic goals and an outlook to the two-day meeting. Following this, Project Co-Coordinator Jyrki Lötjönen from Combinostics outlined the status of the project’s digital platform and the clinical decision support systems (CDSS), to be further developed within Work Package 2, by showcasing mock-ups also to be discussed during the workshop 1 (CDSS platform) on the second day. Next, a member of Linus Jönsson’s Health economics of Alzheimer disease and other dementias group, at Karolinska Institutet, presented the results of an evaluation survey on CDSS across Europe that collected clinicians’ feedback in the European Alzheimer’s Disease Consortium, and project clinical Principal Investigators (PI)’s. The purpose of the survey was to create tools that support clinicians in optimizing the use of novel disease-modifying therapies for Alzheimer’s disease and set the stage for a discussion on how to manage and share clinical data within the project, led by Ferran Lugo of the BarcelonaBeta Alzheimer’s Research Center (BBRC).
This is a critical step for PROMINENT, which will apply data from several studies across Europe to train and validate Alzheimer’s disease prediction models and diagnostic algorithms. This presentation also introduced the workshop 2 (Data Management) on day two. Plans to leverage the expertise and knowledge of Health Technology Assessment bodies regarding the use and collection of real-world evidence was presented by Sofie Persson from IHE, the Swedish Institute for Health Economics. Next, followed an investigation into the PROMINENT clinical study outcome measures, and their operationalization and implementation strategies, by Lena Sannemann from University Hospital Cologne. This was followed by an overview of established communication materials and future plans, which included the launch of the ihi-prominent.eu website by Chris Bintener, an introduction to the Stakeholder Engagement and mapping work by Angela Bradshaw, and an introduction to the plans for Public Involvement by Daphné Lamirel, all of whom are partners from Alzheimer Europe. The session was rounded off with an Innovative Health Initiative (IHI) overview by PROMINENT’s Project Officer, John Clifford, and a detailed account of project management by Audrey Niemann-Jönsson and Anna Hansson (Karolinska Institutet), and Montse Camprubi (SYNAPSE Research Management Partners).
Day 2: Fostering Future Collaboration and Study Insights
The second day of the PROMINENT Consortium Meeting was equally engaging, opening with a workshop on digital platform functionality led by Jyrki Lötjönen. In workshop 2, discussions were spearheaded by Ferran Lugo delving into the nuances of data sharing. Lena Sannemann led workshop 3, which provided opportunity to discuss clinical research priorities concerning outcome measures and timeframes within the clinical studies. The workshops were strong and gave important feedback to key questions relevant to critical cross-work package collaborative work. Presentations of two new IHI projects within Alzheimer’s research was next on the agenda: PREDICTOM, by project PI Dag Aarsland of King’s College London, and AD-RIDDLE by project PI Miia Kivipelto of Karolinska Institutet. Highlighting the interconnected nature of the consortium, these presentations on IHI sister projects facilitated a broader discussion on future collaborative research, shared goals, and potential areas for future collaborations. The meeting concluded with Linus Jönsson summarizing the key points and setting the stage for the consortium’s future, emphasizing the importance of continued innovation and collaboration.
Looking Ahead with Optimism
The PROMINENT Consortium Meeting proves our shared commitment to advancing the field of neurodegenerative disease research. Following half a year of remarkable progress, the consortium looks ahead to a future where its combined efforts can lead to advances in the diagnosis, treatment, and management of dementia and cognitive disorders. We extend our gratitude to all partner organisations and attendees for their invaluable contributions and look forward to continued progress and success in the coming year. Stay informed about the latest developments in the PROMINENT Consortium by subscribing to the project newsletter. Learn more about the project: https://www.ihi-prominent.eu
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