On 14 October 2021, Neuronet convened an online meeting of its data sharing Working Group (WG), moderated by Lennert Steukers (Janssen; Project Leader for Neuronet). The Neuronet Working Groups are cross-project spaces for experts in Innovative Medicines Initiative (IMI) neurodegeneration projects, enabling them 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 patient privacy & ethics, HTA/regulatory interactions and sustainability.
Attendees at the WG meeting included representatives of the EPAD, Mobilise-D, AETIONOMY and EHDEN projects, as well as members of the Neuronet consortium. Lennert kicked off the WG meeting by providing an update on Neuronet activities. These include a recent survey of EFPIA companies, to understand the impact of participation in IMI Neurodegeneration projects, and the launch of an online version of the Neuronet asset map, which presents an overview of all the tangible, reuseable assets developed by projects.
Following Lennert’s presentation, discussions turned to an upcoming report being developed by the group, which addresses key challenges for data sharing and identifies potential solutions based on good practice from IMI neurodegeneration projects. Ending the meeting, representatives from a new IMI neurodegeneration project called EPND (European Platform for Neurodegenerative Diseases) gave an overview of the data sharing strategy that will be used by the project, which will start in November 2021.