Neuronet is an Innovative Medicines Initiative (IMI)-funded coordination and support action, designed to support and enhance collaboration between the diverse projects in the IMI neurodegeneration portfolio. In 2019, Neuronet launched four Working Groups, cross-project spaces for experts to discuss common issues, priorities and opportunities for synergy and collaboration. Each Neuronet Working Group is focused on a particular area of concern for IMI Neurodegeneration projects: data sharing, ethics & patient privacy, sustainability and regulatory/HTA interactions.
In June, Neuronet convened online meetings of its Working Groups (WGs) on data sharing and ethics & patient privacy. On 11 June, Jean Georges (Executive Director of Alzheimer Europe) moderated a meeting of the ethics & patient privacy WG, which was attended by ethics and data protection experts working on the EPAD, AMYPAD, RADAR-AD, MOPEAD, EMIF and AETIONOMY projects, among others. Discussions were focused on the ways in which ethical, legal and social issues are identified and addressed in public-private partnership projects, and how to enhance collaborations between industry and academic partners.
On 17 June, Lennert Steukers and Michaela Rinaldi (Janssen) co-moderated a meeting of the data sharing WG, attended by data experts from EMIF, EPAD, Mobilise-D, IDEAS-FAST and RADAR-AD along other IMI projects. Recent efforts of the data sharing WG have focused on collating information on the barriers to data sharing in the public-private partnership setting, and outlining recommendations to overcome some of these obstacles. During the WG meeting, experts described some of the complexities involved in negotiating data sharing agreements and frameworks that comply with data protection regulations and intellectual property requirements. The WGs will meet again in September, working towards the development of deliverable reports that compile and share learnings on their respective focus areas.
Neuronet receives funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 821513.
