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Neuronet convenes a meeting of its Working Group on data sharing, addressing FAIR data, technical challenges and digital technologies

Friday 05 March 2021

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). The Neuronet Working Groups are cross-project spaces for experts in Innovative Medicines Initiative (IMI) neurodegeneration projects, providing them with a forum to address common issues and priorities and identify opportunities for synergy and collaboration.  The Working Groups are organised around four key areas of interest for IMI projects, one of which is data sharing; the others are HTA/regulatory interactions, patient privacy & ethics, and sustainability.

Kicking off the data sharing WG meeting, Herman van Vijmen (Janssen), Leader of the FAIRplus IMI project, provided an introduction to FAIRplus, which is developing guidelines and tools to make data Findable, Accessible, Interoperable and Reusable (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 (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 AE report on data sharing in dementia research, summarising the background to this report and its key findings and recommendations.

Neuronet has received funding from the IMI under grant agreement No.821513.