This research area supports collaborative research into neurodegenerative diseases, with the ultimate aim of developing risk reduction strategies for the future.
Neurodegenerative diseases are incurable and debilitating conditions that result in progressive degeneration or death of nerve cells. They include Alzheimer’s disease and other dementias, Parkinson’s disease, Huntington’s disease, motor neurone disease, Creutzfeldt-Jakob disease and multiple sclerosis. Of these, the dementias are responsible for the greatest burden of disease, with Alzheimer’s disease representing over 60% to 70% of cases.
Neurodegenerative diseases are strongly linked with age, and the UK and other European countries have an increasingly ageing population. Currently 16% of the European population is over 65, with this figure expected to reach 25% by 2030.
Dementias are the biggest health challenge of our generation; one in three people born today will develop the disease. With one million people in the UK predicted to have dementia by 2025 and the current cost of £26 billion a year to the UK economy, there is a huge financial and societal impact, yet we are still without treatment.
Medical Research Council (MRC) dementias initiatives
In November 2015 the government announced the UK Dementia Research Institute to lead the UK’s dementias research efforts and to fulfill the ambition identified in the Prime Minister’s 2020 Challenge on Dementia. The aim of the institute is to transform treatment and care as well as leading the way in risk reduction strategies for future generations.
A further £100 million jointly from the Alzheimer’s Society and Alzheimer’s Research UK announced in May 2016 brings the total investment in the institute up to £290 million. The institute will bring together world-leading expertise in biomedical care, public health and translational dementia research.
In 2014, MRC launched the landmark Dementias Platform UK under our ‘stratified medicine for patient benefit’ initiative on age-related neurodegenerative disease and the dementias. The £63 million industry-partnered platform is based around the UK’s strength in cohort studies. The platform is furthering our understanding of neurodegenerative disease progression and will build the basis for future intervention studies.
Our activity in neurodegenerative disease research extends beyond the UK, with MRC leading the development of two international collaborations. The Joint Programme in Neurodegenerative Disease (JPND) and the Centres of Excellence Network (CoEN) initiatives are pooling resources from the UK and other countries across Europe and North America to build collaborative, cross-border research activity in neurodegeneration.
EU JPND research
We are a leading partner in a transnational strategy aimed at coordinating national efforts in neurodegenerative research across the biomedical and social spectrum. The initiative is being conducted through a joint programming approach between 30 participating countries in Europe and beyond. Launched in April 2010, JPND aims to increase coordinated investment by JPND countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for people who have neurodegenerative disease.
JPND has a scientific strategy which is being implemented through innovative ways of pooling expertise and resources, to address any fragmentation and duplication of current research efforts. Implementation includes funding opportunities and other forms of transnational collaborative activity such as:
- the JPND 2017 global cohort portal for longitudinal cohort studies
- an interactive portal for experimental models to study neurodegeneration
- a database of neurodegenerative disease research
- a comparison of 2011 data with research mapping data from 2016, across JPND countries
- the promotion of health and social care research
- engagement with industry and the EU-industry innovative medicines initiative programmes.
An updated JPND research strategy, known as the Strategic Research and Innovation Agenda (SRIA), was published in 2018.
MRC is a founding partner of CoEN, an international initiative launched in 2010 involving national research funders in the UK, Canada, Germany, France, Flanders, Italy, Republic of Ireland, Slovak Republic and Spain. The initiative links established centres of excellence to carry out collaborative neurodegeneration research.
The overall aim of the initiative is to build collaborative, cross-border research activity in neurodegeneration, focusing on adding value to the expertise and critical mass already established within national centres of excellence. A long-term goal of CoEN is to provide a mechanism for industry to link to these centres of excellence to develop novel and effective industry-academic partnerships in pre-competitive research. CoEN is aligned with the broader JPND, although it operates as an independent entity.
The CoEN Pathfinder scheme is distinct from other neurodegeneration transnational funding calls such as JPND and the Innovative Medicines Initiative, and for many countries it is also distinct from national grant schemes. Pathfinder funding opportunities set out to encourage the community to think creatively, to stimulate new and unconventional solutions to the challenges of neurodegeneration research by undertaking high-risk and high-payoff projects.
In 2014 the International Longevity Centre UK published a report on new perspectives and approaches to understanding dementia and stigma championed by MRC together with Alzheimer’s Research UK and the Alzheimer’s Society, and supported by Pfizer. This report looked at stigma from different perspectives and shone a light on the impact that the fear around dementia has on those living with the condition, their families and carers. Stigma around dementia prevents the research community from capturing a full picture of the disease and is a little-researched area. The report provides a unique and joined-up focus on the topic.
Vascular ageing and neurodegenerative diseases are two of the leading health challenges faced by our society. Despite this, there are still significant knowledge gaps in our understanding of the biology of ageing in relation to the central nervous system, particularly about the interplay between the vasculature and neuronal systems at the mechanistic level.
Dementia Ecosystem UK: action through alliance
Following the Prime Minister’s Challenge on Dementia 2020, major UK initiatives, some from MRC, have been launched, spanning basic and clinical research. We believe it is now critical to coordinate these efforts and make more of our rich dementia research landscape, clinical infrastructure and networks. To tackle the challenge of dementias, the research community must capitalise on the breadth of available resources and expertise and build an integrated ecosystem.
On 2 April 2019 MRC took part in a meeting with directors of major UK dementia programmes and representatives from major UK dementia funders including industry and the Dementia Discovery Fund which resulted in the establishment of Dementia Ecosystem UK.
The following organisations are represented in the alliance:
- Alzheimer’s Research UK Drug Discovery Alliance
- Alzheimer’s Society
- European Prevention of Alzheimer’s Dementia
- MRC Dementias Platform UK
- National Institute for Health Research (NIHR) National Director for Dementia Research Office
- UK Dementia Research Institute (UK DRI)
The mission of Dementia Ecosystem UK is to work together to transform our understanding of the complex trajectory of dementia and ultimately how to tackle it. The alliance will bring together the major UK dementia research initiatives and create a joined-up community, from fundamental discovery science to the clinic, by:
- setting standards and incentives for sharing resources, reagents, data, approaches, expertise, biosamples and ideas
- developing initiatives at the basic-clinical interface, with appropriate patient involvement, to better understand the evolving changes affecting the brain throughout the progression of dementia
- developing a joint communication strategy to de-stigmatise dementia and emphasise the importance of prevention in brain health.
UK DRI Director Professor Bart De Strooper said: “Dementia Ecosystem UK is cutting through boundaries – across organisations, locations and sectors. We’re striving to see sharing and openness built into the DNA of every research project. Together we will put connections in place to empower our researchers and clinicians to interact and collaborate in the most productive ways possible.”
A landscape for dementias research
MRC has joined forces with NIHR to look at how we could best illustrate the dementias research landscape in the UK and show how teams of experts work together across the country for a better future for people with dementia.
A list of organisations carrying out dementias research in the UK:
- Alzheimer’s Research UK (ARUK)
- ARUK Drug Discovery Alliance
- Alzheimer’s Society
- Dementias Platform UK
- Dementia Translational Research Collaboration
- ENRICH – Enabling Research in Care Homes
- European Prevention of Alzheimer’s Dementia Consortium
- Francis Crick Institute
- Health Data Research UK
- JPND Research
- MRC Laboratory of Molecular Biology
- UK Clinical Record Interactive Search
- NIHR Clinical Research Network
- NIHR Join Dementia Research
- UK Biobank
- UK Brain Banks Network
- UK DRI
- World Health Organization.