On 5 March, Neuronet convened an online meeting of its data sharing Working Group (WG), co-moderated by Lennert Steukers (Janssen; Project Leader for Neuronet) and Manuela Rinaldi (Janssen; Neuronet consortium member). There were three key topics on the agenda: making data Findable, Accessible, Interoperable & Reusable (FAIR), technical challenges and digital technologies for real-world data collection.
Kicking off the WG meeting, Herman van Vijmen (Janssen), Leader of the Innovative Medicines Initiative-funded (IMI) FAIRplus project, provided an introduction to FAIRplus, which is developing guidelines and tools to make data FAIR. The overarching aim of the project is to enhance knowledge sharing, accelerating innovation and paving the way to insights that could benefit society. To do this, FAIRplus has recently developed a FAIR cookbook as well as legal templates, to support IMI projects in making their data FAIR. Herman van Vijmen described the sections of the FAIR cookbook and discussed the importance of making data FAIR to meet the sustainability objectives of IMI projects.
Next, Carlos Diaz (Synapse; Neuronet Project Coordinator) outlined some of the technical challenges associated with data sharing, highlighting the complexity of sharing datasets that use different data dictionaries, involve multiple data sources and formats, and usually contain sensitive, personal information.
Digital data sharing and remote monitoring technologies were next on the agenda, with discussions on how best to support projects that generate and use digital biomarker datasets collected using wearable technologies, for example. Closing the session, Angela Bradshaw (Alzheimer Europe; Neuronet consortium member) provided an overview of the recent Alzheimer Europe report on data sharing in dementia research, summarising the background to this report and its key findings and recommendations. These include the need for greater harmonisation of, and clarity about data protection measures to preserve patient privacy, and a call to increase digital literacy and public involvement in dementia research.
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