Neuronet, a coordination and support action funded by the Innovative Medicines Initiative (IMI), brings together 21 IMI consortium projects working on neurodegenerative disease (such as Alzheimer’s), encompassing over EUR 386 million in research funding.
The Neuronet programme held four parallel sessions as part of the Alzheimer Europe conference on 29 November to 1 December 2021. This involved showcasing public and patient involvement, common challenges & lessons learned, how preclinical research can have a potential impact on people’s lives and have a look into the future as well as the portfolio’s impact.
The first parallel session was chaired by Dianne Gove from Alzheimer Europe. It was entitled “Elevating the patient voice: public involvement in Innovative Medicines Initiative neurodegeneration projects”. The four presentations in this session introduced the work of involving the public, patients as well as people affected by neurodegenerative conditions in IMI projects. First, Ana Diaz (Alzheimer Europe) spoke about Alzheimer Europe’s work to promote Public Involvement in dementia research. Next, Stina Saunders & a member of the participant panel (The University of Edinburgh) introduced the lessons from the European Prevention of Alzheimer’s Dementia Research Participant Panel. After that, Johanna Graeber (University Medical Center Schleswig-Holstein) reflected on the patient involvement & engagement in IDEA-FAST. The session closed with a presentation by Alison Keogh (University College Dublin) on a roadmap of activity to develop patient and public involvement and engagement structures in Mobilise-D.
The second parallel session was chaired by Carlos Diaz from SYNAPSE, who is Neuronet coordinator. The session revolved around “Collaboration and best practice: common challenges & lessons learned from the Innovative Medicines Initiative neurodegeneration portfolio”.
After an introduction to the Neuronet approach on supporting collaboration and showcasing achievements, by Carlos Diaz. Four consortium members introduced the work that has been done as part of Neuronet’s Working Groups, followed by a general discussion between panel members. The speakers included:
- Lennert Steukers (Janssen) – Data sharing & Re-use
- Dalia Dawoud (NICE) – Health Technology Assessment/Regulatory
- Angela Bradshaw (Alzheimer Europe) – Ethics & Patient Privacy
- Lewis Killin (SYNAPSE) – Sustainability