Neurodegenerative diseases and dementia
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 60-70% of the 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. In the UK it has been estimated that dementia alone costs the economy £17 billion a year.
MRC Dementias initiatives
In November 2015 the MRC announced the UK Dementia Research Institute which will lead the UK dementias research efforts and is aimed at transforming treatment and care as well as leading the way in risk reduction strategies for future generations. A further £100M jointly from Alzheimer's Society and Alzheimer's Research UK announced in May 2016 brings the total investment in the Institute up to £250M. The UK Dementia Research Institute will bring together world-leading expertise in biomedical, care, public health and translational dementia research. Website: https://ukdri.ac.uk/
In 2014, the MRC launched the landmark Dementias Platform UK under our ‘Stratified Medicine for Patient Benefit’ initiative on age-related neurodegenerative disease and the dementias. The £63M 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 the MRC leading the development of two international collaborations. The Joint Programming 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.
The EU Joint Programme in Neurodegenerative Disease Research (JPND)
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 both calls for proposals 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) - will be published in 2018.
Since 2011 MRC has provided £6m to fund UK participation in 16 transnational JPND projects, with national funding enhanced by European Commission contributions:
- 2011: Optimisation of biomarkers and harmonisation of their use
- 2013: Genetic, epigenetic and environmental risk and protective factors
- 2015: JPcofuND triple call on risk and protective factors, animal and cell models and longitudinal cohorts
In 2014 and 2016, additional JPND awards were made to support expert Working Groups in areas where methodological and structural alignment could be guided through the publication of guidelines and position papers. For each call MRC funded one of the ten €50k (£40k) JPND awards:
- 2014: Longitudinal cohort approaches in neurodegenerative diseases
These awards enabled leading scientists in the field to develop frameworks and guidelines for the community, in order to enhance the use of existing longitudinal cohort studies for neurodegenerative disease research. Reports from this work are now available on the JPND website.
- 2016: Harmonisation and alignment in brain imaging methods
These Working Groups will address the methodological challenges facing different imaging modalities for a range of neurodegenerative diseases, among them MRI, PET, ultrasound, MEG and EEG, as well as multimodal approaches. For further information on UK participation in the working group awards see JPND 2016 Call for Working Groups.
- 2017: Pathway to analysis across neurodegenerative disease
Centres of Excellence Network in Neurodegeneration (CoEN)
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 undertake 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 Innovative Medicines Initiative, and for many countries distinct from national grant schemes. Pathfinder calls set out to encourage the community to think ‘outside the box’, to stimulate new and unconventional approaches and creative solutions to the challenges of neurodegeneration research by undertaking high-risk/ high-payoff projects.
Under the fourth CoEN funding call, £4m (€4.6m, CA$6.6m) has been awarded for 9 ‘Pathfinder’ projects, with the MRC making available £1.2m to support CoEN research in the UK. These projects constitute innovative and creative proof of principle studies which, if successful, will provide a step change in neurodegeneration research.
Further information can be found on the CoEN website.
In 2014 the International Longevity Centre UK published a report on social stigma around dementia championed by MRC together with Alzheimer's Research UK and the Alzheimer's Society and supported by Pfizer. This report looks at stigma from different perspectives and shines 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 in itself a little-researched area. The report provides a unique and joined-up focus on the topic.
More information can be found on our news page.
Vascular ageing and neurodegenerative diseases are two of the leading health challenges faced by our society, yet there are significant knowledge gaps in current understanding of the biology of ageing as it relates to the central nervous system (CNS), particularly about the interplay between the vasculature and neuronal systems at the mechanistic level.
Following the Prime Minister’s Challenge on Dementia 2020, the last few years have seen the launch of major UK initiatives, some from the MRC, 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 the 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
- Medical Research Council
- MRC Dementias Platform UK
- NIHR National Director for Dementia Research Office
- UK Dementia Research Institute
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.
“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,” said UK DRI Director Professor Bart De Strooper. “Together we will put connections in place to empower our researchers and clinicians to interact and collaborate in the most productive ways possible.”
Dementias are the biggest health challenge of our generation; one in three people born today will develop the disease. With 1 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 huge financial and societal impact, yet we are still without treatment.