Alzheimer’s disease affects over 50 million people worldwide, and this number is set to rise further as populations age. Although some treatments to slow the progress of the disease have recently been approved by regulators, these are not suitable for all patients. The diversity of the disease and the sheer complexity of the brain, coupled with the fact that by the time symptoms appear, the disease is often already quite advanced, all mean that it is incredibly difficult to develop new treatments and identify the patients most likely to benefit from them.
Tackling these challenges requires “bold collaborations” involving everyone active in Alzheimer’s research, including universities, pharmaceutical companies and, crucially, people living with Alzheimer’s disease and their families.
It is therefore natural that Alzheimer’s disease was a priority for the Innovative Medicines Initiative (IMI) since the very beginning, and it is already the focus of one of the very first Innovative Health Initiative (IHI) projects. Now, a special issue of the journal Frontiers in Neurology shines a spotlight on these projects – showcasing their achievements, sharing their best practices and lessons learned, and offering suggestions for improvements for future public-private projects. Together, they demonstrate how the public-private approach, coupled with strong patient involvement, can deliver results in this important area.
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A deep dive into the IMI neurodegeneration portfolio, its impacts and added value
The goal of IMI project NEURONET was to coordinate and support the work of the wider IMI neurodegeneration portfolio, and bring together in a kind of ‘one stop shop’ the resources and tools developed by the research and innovation projects. The NEURONET team was therefore well placed to carry out a detailed analysis of IMI’s Alzheimer’s disease projects. They note that the research covers preclinical studies in cells and animals, translational work with samples and data from patients and participants, clinical studies including longitudinal cohort studies and clinical trials, and the development and testing of digital biomarkers. Between them, they have delivered a range of useful tools, data and results.
A second paper from NEURONET explores the impacts of IMI’s neurodegenerative disease projects on the project partners, and uncovers areas where improvements could be made.
Another paper on the impacts of IMI’s Alzheimer’s and related projects draws on interviews with senior researchers involved in IMI projects EMIF, EPAD, PRISM, AETIONOMY, eTRIKS and EQIPD. They note that ‘IMI provided ‘a unique boost to collaboration’ and has been ‘transformative’ to the EU and US funding and policy landscapes. At the same time, the interviewees provide suggestions for improvements to how PPPs work.
Dare to share data? IMI projects show the way
Over the years, European research projects (including IMI projects) have generated vast amounts of samples and associated data. Potentially, these resources could be used to answer new research questions and so speed up the development of new treatments. However, these resources are currently under-utilised because they are effectively held in ‘silos’ and efforts to share them are hampered by complex security, legal and ethical issues. Three articles in the special issue examine how IMI projects are working to facilitate the sharing of data (and in some cases, samples) while continuing to respect rules relating to patient privacy, etc.
Here, again, NEURONET’s cross-cutting role helped the project’s working group on data sharing and re-use to deliver a paper comprising valuable examples of good practice and lessons learned on data sharing from a number of different projects.
NEURONET, along with fellow IMI ‘big data’ project EHDEN, is the focus of another paper on the importance of using data and knowledge more efficiently. NEURONET coordinated, harmonised, and integrated data and results from IMI Alzheimer’s disease projects, delivering important assets for the research community. Elsewhere, EHDEN is mapping diverse health data to a common data model.
Finally, a paper from the European Platform for Neurodegenerative Diseases (EPND) project explains how they are working to advance biomarker research and development by facilitating access to not just data, but associated samples.
A digital approach to studying disease
Three IMI projects, RADAR-AD, IDEA-FAST and MOBILISE-D, joined forces in a paper discussing the challenges, feasibility and value of digital technologies to assess the impacts of diseases such as Alzheimer’s disease on people’s daily lives.
Putting people with Alzheimer’s disease first
People with Alzheimer’s disease are closely involved in a number of IMI projects, thanks in large part to the work of patient organisation Alzheimer Europe. the Alzheimer Europe team wrote a paper offering its perspective on public involvement in research, why it matters, and how it should be reported.
Towards a platform trial for Alzheimer’s prevention
IMI project EPAD’s longitudinal cohort study resulted in a wealth of samples and data which are now available to the wider research community for further studies. Furthermore, as the project team explains, the learnings from EPAD will undoubtedly aid future attempts to set up platform trials in this field.
A clearer picture of amyloid
The AMYPAD project added significantly to our understanding of how amyloid (a hallmark of Alzheimer’s disease) is deposited in the brain and, as they explain in their paper, how this can be measured by PET (positron emission tomography) to follow disease progression and its potential halting by a treatment.
Public-private collaboration: continuing the story in IHI
Recent months have seen the approval of the first treatments for dementia. However, the process of integrating these treatments into the healthcare system is complex. The final paper in the special issue introduces one of the very first IHI projects, PROMINENT. PROMINENT is building a digital platform to guide clinicians, in collaboration with patients and their carers, on the optimal use of novel interventions such as disease modifying treatments (DMT) while gathering real life data on the use and value of these technologies in routine care.
Meanwhile, since the special issue was finalised, IHI has launched two further projects in the Alzheimer’s field – PREDICTOM and AD-RIDDLE, both of which aim to develop ways of identifying people who are at an increased risk of developing dementia. Furthermore, AD-RIDDLE will use EPND to host its data, highlighting the links between the projects from IMI and IHI.