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A radical, end-to-end approach – dementia impact event report

This report is a summary of an IMI-hosted event called IMI Impact on dementia, part of a series of events intended to showcase the successes of projects launched since the programme’s inception in 2008. Held online in June 2021, the Impact on dementia event brought together people involved in IMI-funded dementia research, whether as researchers in projects from academia, project partners from the pharmaceutical sector, patients working with them, or others involved in the strategic direction of IMI.

Image by Natali Mis via Shutterstock
Image by Natali Mis via Shutterstock


The strategy - “end to end”

The impact of dementia is huge, declared Luc Truyen, who leads development and external affairs in neuroscience at Johnson and Johnson, speaking about the history of failed interventions for treating the disease. He called it an emergency and likened it to a “tsunami” that is sweeping the globe. Dr Truyen is the former chair of IMI’s strategic governing group (SGG) on neurodegeneration, which ensures coordination of IMI research in different thematic areas, while working in developing ideas for new topics. When the neurodegeneration group embarked on their journey, he said, they did it with the intention of tackling dementia in an end-to-end fashion. Among the questions that need to be answered, he said, are: how do we cover the needs of all the stakeholders, and how to identify and validate new drug targets, molecules and biomarkers, as well as new trial methodologies and endpoints (including digital). But beyond this, there is still a long way to go before the treatments reach the patients. He called for improved preparedness in the healthcare system, from basic science all the way to healthcare delivery - “end to end”

The SGG group is careful to avoid duplicating efforts, and has recognised that parallels between dementia and other neurodegenerative diseases like ALS, Huntington’s disease and Parkinson’s means that IMI projects can leverage findings from one to another. He commended the degree of participation in IMI projects of contributing companies beyond pharma companies - not just classic players get involved, but also digital, med-tech, wearables. “We are really embracing all kinds of contributors,” he said, commending IMI for making progress in disease understanding, in finding “enemies” – meaning targets – and translating discovery signals into human signals, then generating evidence in better clinical trials, while engaging with regulators and health technology assessment bodies.

IMI is very productive at putting together the stakeholders, and the wealth of research capacity is astonishing, he said. One thing we want to promote in this field is radical hypotheses, “to avoid the conservative approach where everyone follows the same hypothesis. We are looking for fresh ideas. We are operating in the cracks of projects.”

IMI’s research fits in with global efforts and, in many ways, IMI is a role model, he said. “The impact will be clear in the years to come.”

Patients - invited to the ball, but also asked to dance

Helen Rochford-Brennan is an Irish woman living with dementia who is involved in patient advocacy. She declared herself to be very grateful to be able to join the event, and in one of the more emotionally moving parts of her speech, she described her life as the fog of dementia descended. A “mother, wife, sister, a professional with a career, passionate about human rights,” she began to forget words and family life became difficult. A nurse told her about research in University College Dublin, back at a time when, she said, nobody really talked about public involvement in medicines research. That was her first step to becoming an advocate, and it led to her involvement in Alzheimer’s Europe, a prominent advocacy group. “We all need to work together, clinicians people, politicians, people affected, researchers.”

Mrs. Brennan is a member of the European working group of People with Dementia at Alzheimer’s Europe, which has participated in IMI projects including RADAR –AD, which is about functioning. She said that the patient advocates were able to tell the consortium what functioning actually means and what they care about most. They also helped choose the devices to use in the study, and contributed advice on data privacy and ethics. The group has met with many projects on many topics throughout the years.

Their contributions are in papers and journals and sometimes at conferences, she said, telling the audience that it is “very gratifying” to be acknowledged. “We are helping them make decisions in ways that we think is very relevant and helpful. We are also changing attitudes.” It gives her hope, she said, and all we have is hope because there is no cure. Diversity is being asked to the party, she added, while inclusion is being invited to dance.

The point she drove home is that it’s important to have people like her involved in research. “We are the experts by experience, and can bring a unique perspective.” She feels that patients do have an influence, but offered advice to make sure it works: activities need to be carefully planned and not just a last minute thought, as happens sometimes. They are delighted to be involved but they don’t want to be considered an add-on, and not something that they should be grateful for. They must be involved from the start – to set the questions. The specific needs and wishes need to be addressed.

Public-private partnerships are important for this, she concluded, thanking IMI for successful efforts at patient engagement.

Research highlights

Caros Diaz, CEO of SYNAPSE Research, leads the NEURONET coordination and support action project, which was established to “transition from a collection of projects to an integrated programme” that encompasses all IMI neurodegenerative research. NEURONET, by identifying gaps and promoting synergies between projects, enhances the impact of the whole. IMI is amazing, said Mr. Diaz, in its ability to overcome divides between and within projects, and promoting a very needs-based focus. IMI is very pragmatic, he said, and great for including stakeholders and patients. “We wanted to move the centre of gravity from the project to the asset. A project is temporary, the asset can remain, it can become a building block for other assets.” He encouraged everyone listening to visit the project’s Knowledge Base, which offers an integrated view of the programme as well as an asset map that shows you the variety of assets coming out of projects.”

He mentioned interim results of a survey that showed that one third of EFPIA respondents saw moderate-to-high impact of IMI projects, while half saw impact on their strategic partnerships and others in their public image. He highlighted the Academy of early career researchers, which focuses on the needs of young researchers and covers 39 centres in 13 countries, and offers a good example of systems leadership.

He spoke about the persistent problem of projects working in silos. This is not an IMI problem, but a general problem, he said, comparing it to fortresses. “They are fighting for space in journals, fighting for funding,” but if we fragment, we are less capable. Saying that this is a medieval way of organising science, he called for a renaissance.

Rachel Steeg, project manager at Fraunhofer UK Research Ltd., explained the EBiSC2 project, which is a research infrastructure where human-induced pluripotent stem cells are banked, managed and distributed to researchers, allowing for the study of “Alzheimer’s disease neurons in a dish”. Using this kind of stem cell in research was much more complicated before EBiSC2. A core goal of the EBiSC2 bank is to increase reproducibility of results, a major problem in research, and there are currently 900 lines from all over the EU and beyond in the bank. Collaboration is a key feature of EBiSC2, and they collaborate with other IMI projects, big and small, to provide cell lines and disease models across different diseases, with neurodegenerative research a very big focus.

The public-private nature of the project has been critical, says Dr. Steeg. Public and private (industry) actors have different needs; while the public partners need the process to be quick and streamlined, for industry partners the critical issues are related to IP rights and use. These are very different things but very crucial. She also thanked IMI.

One IMI dementia-related project being watched closely is AMPYPAD, which is a looking at the usefulness of a particular type of imaging using tracers in detecting the presence of amyloid, the plaque that is implicated in the development of Alzheimer's. Gill Farrar from GE Healthcare, an imaging medical devices manufacturer, briefly explained the problem of amyloid protein build up, and gave an overview of the project’s work programme.

Dr Farrar explained the impact of the scan on patient management and diagnosis, and spoke of the wealth of studies they have undertaken. They are, she said, able to capture people early, delivering new evidence as well as thousands of images. These are invaluable assets. In early results, they have shown that the project methods allow a much more refined and precise distinction of the two critical disease populations - those with a positive scan and a negative amyloid scan. “We now have deep knowledge of how to measure presence of amyloid,” she said.

“What we have now is the power of generating data with much bigger numbers. We are asking the relevant questions.” To put their work into wider context, the recent approval of the Biogen Alzheimer’s drug won approval based on the same imaging that AMYPAD are studying.

Who comes first?

Who comes first? asked Prof. Olivier Blin, Head of the clinical pharmacology and pharmacovigilance dept. at Aix-Marseille University, in his closing remarks. The answer is the patient. Patients are the reason why EFPIA and the European Commission have made such a huge effort, devoting 300 million to dementia. Not one single team, company or country can bring together all the people, knowledge and effort . He praised IMI’s progress in filling the pipeline, translation, and new taxonomies. He made a point to call for a focus on patients not only in rich countries but also in poor countries.

He says that computing, data science software medical devices are important, but again, so are the social and human sciences because patients come first. Researchers, too, are helped by having human contact.

Elisabetta Vaudano, Principal Scientific Officer at IMI, closed the event by thanking everyone who participated, adding a reminder to stay tuned because there are more IMI dementia projects ongoing than those presented, with a new project to be launched at the end of 2021.

Read more

Dementia - what is the problem, and what is IMI doing about it?

IMI impact on dementia - event page 

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