On 3 June, the Patient Privacy and Ethics Working Group of the Neuronet project convened an online meeting. The Neuronet Working Groups (WGs) are cross-project spaces for experts to discuss common issues, priorities and opportunities for synergy and collaboration, providing Neuronet with expert advice on four identified areas of interest: data sharing, HTA/regulatory interactions, patient privacy & ethics, and sustainability. As such, the WGs make an important contribution to Neuronet’s goal of compiling and leveraging the expert knowledge that is presently scattered across the different neurodegeneration projects in the Innovative Medicines Initiative (IMI) portfolio.
The primary goal of the Neuronet Patient Privacy and Ethics WG is to compile and share learnings on patient privacy and ethics, including guidance on ethical standards and practices to ensure personal data is protected. The June WG meeting was attended by ethics and data protection experts working on the EPAD, AMYPAD, RADAR-AD, MOPEAD, EMIF and AETIONOMY projects, among others, and was focused on identifying key topics to be addressed by the WG over the next two years of Neuronet. Potential topics that were discussed include the communication of risk to participants, consent clauses for data reuse, reidentification of participants and public involvement in research. The WG meeting was chaired by Jean Georges, Executive Director of Alzheimer Europe. The next WG meeting will be held in July. Neuronet receives funding from the Innovative Medicines Initiative 2 Joint Undertaking (JU) under grant agreement No 821513.
Link to Neuronet website: https://www.imi-neuronet.org/
