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P5. Neuronet: European research collaboration in Alzheimer’s disease and beyond

Detailed programme, abstracts and poster presentations

P5.1. The Innovative Medicines Initiative and its neurodegeneration portfolio

VAUDANO Elisabetta

Innovative Medicines Initiative, Brussels, Belgium

Some 179 million Europeans are living with brain disorders including neurodegenerative diseases e.g. Alzheimer’s disease. Mental health conditions, like depression, often accompany such diseases increasing the complexity and the burden for the affected individuals and society. There is still no cure for neurodegenerative disorders nor a treatment able to slow the progression of disease, and the best patients can hope for is a treatment to alleviate their symptoms. Unfortunately, for many patients, the limited treatments on offer do not work or come with severe side effects. Part of the problem is that developing new drugs is a slow, costly process, and this is especially true for drugs for neurodegenerative disorders. Despite significant investment by both the public and private sector to tackle the challenge, while there has been some basic progress, we still do not have tangible results such as a new Alzheimer’s treatment. The achievement of such target will depend on the ability to break silos and work together across stakeholders with a common agenda. The silos are both scientific (e.g. “disease silos”) and due to difference in culture and incentives among the complex stakeholder community (industry, academia, regulators, payers etc). Most importantly, it is necessary that the patients are partners to ensure meaningful outputs and outreach to the citizens for full societal impact. The Innovative Medicines Initiative (IMI) has been a champion of these approaches and has particularly invested in neurodegenerative disorders research, with specific focus on Alzheimer’s disease. In my talk, I will present examples of the important partnerships established by IMI, the resources developed and the already delivered results to show the power and further potential of the IMI model.

P5.2. Neuronet – Efficiently Networking European Neurodegeneration Research

DÍAZ Carlos1, PLA Sandra1, COLL Nina1, GEORGES Jean2, BOUVY Jacoline3, MARSTON Hugh4, PRADIER Laurent5, ROACH Arthur6, TRABER Martin7, MERLO-PICH Emilio8, PEMBERTON Darrel9

1SYNAPSE, Barcelona, Spain, 2Alzheimer Europe, Luxembourg, Luxembourg, 3NICE, London, United Kingdom, 4Eli Lilly, Windlesham, United Kingdom, 5Sanofi, Chilly, France, 6Parkinson’s UK, London, United Kingdom, 7Roche, Basel, Switzerland, 8Takeda, Glattpark, Switzerland, 9Janssen Pharmaceutica, Beerse, Belgium

NEURONET is a new Innovative Medicines Initiative (IMI) Coordination and Support Action (CSA) aiming to support and better integrate projects in the growing IMI Neurodegenerative Disorders (ND) portfolio. Its primary objective is to establish an efficient platform to drive synergy and collaboration across IMI ND projects, multiplying their impact, enhancing their visibility and facilitating coordination with related initiatives both in Europe and globally.

NEURONET has been conceived as an eminently operational, pragmatic and agile instrument that will analyse information, assets and needs from the various ND initiatives supported by IMI in order to accelerate the development and implementation of novel therapeutics in this area across Europe. This will be achieved by developing a platform that, on the one hand, will facilitate interactions between IMI ND projects and provide management support to the whole programme, and, on the other hand, will map and assess their scientific impact and their intellectual and technological contributions. Moreover, NEURONET will also aim to identify common issues across projects, share the lessons learned and assist in the building of future projects that could address any detected unmet needs in the field.  All NEURONET learnings and analyses will be recorded, and a series of actions will be recommended for optimizing their value, accessibility and sustainability.

Although resources in NEURONET are very limited, the resources invested in the IMI ND project portfolio are huge (in terms of capacity and expertise). Therefore, NEURONET aim will be to catalyse those resources, by creating structures that help create common direction, define problems and harness the power of the different projects towards jointly beneficial outcomes. Designed to take a different approach to typical CSAs, NEURONET ultimate aim is to fuel scientific progress and collaboration that can improve the lives of the millions of people who live with neurodegenerative diseases.

P5.3. Patient and Public Involvement in the IMI research portfolio

DIAZ Ana

Alzheimer Europe, Luxembourg, Luxembourg

The presentation will introduce the concept of Public and Patient Involvement (PPI) in dementia research. It will focus on different ways in which organisations, like Alzheimer Europe, can contribute to the IMI research portfolio, in particular though the involvement of people affected by dementia at different points of the research cycle. PPI is about carrying out research‘with’ or ‘by’ people affected by dementia rather than ‘to’, ‘about’ or ‘for’ them” and should be conducted in such a way that it promotes their meaningful and active involvement and represents a true partnership between people affected by dementia and researchers. Examples of the work that AE and its European Working Group of People with Dementia have conducted in the context of PPI with different IMI projects will be provided. The presentation will also briefly highlight specific European initiatives and organisations, such as the IMI-funded project PARADIGM, currently working to develop models on meaningful patient involvement.

 

 
 

Last Updated: Wednesday 14 August 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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