Dementias and Neurodegeneration

Delivery

The NIHR supports patients and the public to participate in high quality research taking place in health and care settings across England, advancing knowledge and improving care.

The Government’s Challenge on Dementia sets out the ambition for England to be the best place in the world to undertake research into dementia and other neurodegenerative diseases by 2020. A review into the progress of the Challenge took place in 2018.

NIHR Clinical Research Network

The NIHR Clinical Research Network (CRN) includes 30 specialty groups, who coordinate and support the delivery of high quality research by therapy area. Some of this research is funded by the NIHR, but most of it is funded by non-commercial organisations, such as charities or universities, and the life sciences industry.

We provide researchers with the practical support they need to make research happen through our Study Support Service. This service supports the set up and delivery of clinical research in the NHS and in other health and care settings.

We have a tailored Study Support Service offer for non-commercial organisations, as well as a tailored offer for the life sciences industry.

Supporting dementias and neurodegeneration research

The CRN has expertise in research on all stages and types of dementia, from pre-symptomatic through mild cognitive impairment to more advanced stages. This includes Alzheimer’s disease, Lewy body dementias, vascular cognitive impairment, mixed dementias, frontotemporal dementia and other less common forms. Studies span the full translational research pathway.

Neurodegeneration also is part of the Dementia and Neurodegenerative Diseases Specialty. We support studies in neurodegenerative conditions such as Parkinson’s, Huntington’s and Motor Neurone Disease. The specialty supports a wide range of research in these disease areas, including research into the underlying mechanisms and causes, ways to prevent, new symptom- and disease-modifying treatments and better care.

We support researchers from across a range of disciplines including neurology, old age psychiatry, geriatric medicine, genetics, general practice, psychology, nursing and other allied health professions. We deliver research across a wide range of health care settings, including primary and community care, mental health services and acute hospitals.

In 2019/20, the Dementias and Neurodegeneration Speciality delivered 86% of studies to time and to target. We have expertise in the delivery of Phase II and III studies, including multi-site international, randomised clinical trials. Our neurodegeneration industry lead for commercial studies, together with our stratification lead, provides strategic direction as well as an operational link between industry, the NIHR and researchers, ensuring that as a nation we have specialist sites who are trial-ready for the innovative therapeutics being developed.

Specialist recruitment expertise

Our Dementias and Neurodegeneration Specialty has been very successful in recruiting patients to studies and we facilitate and recruit to a wide range of studies across the UK.

Our local teams of research staff are specialists in facilitating the set up and recruitment to studies in England with substantial experience of supporting all types of research studies including complex and multi-centre clinical interventions. We can provide access to a network of accredited memory clinics, clinical trial units, clinical research facilities, a national PET-MR dementia network, informatics supporting e-records research, a stem cell network and nationally coordinated brain banking.

Specialist neurodegeneration cohort study initiatives supported by the major charities and investigators ensure that we have trial-ready potential participants who are well phenotyped, and also, increasingly, genotyped. Regional research registers also facilitate patient access (such as PRO-DeNDRoN in PD and MotoDeNDRoN in MND). We also work closely with charities to identify access and recruitment needs and solutions, ensuring research access is as inclusive as possible.

In addition, Join Dementia Research (JDR) has been established to facilitate recruitment to ethically approved dementia research studies taking place in the UK. Over 40,000 volunteers have joined the JDR register since its launch - with over 20,000 participants recruited into dementia studies via the service.

Clinical Studies Groups (CSGs)

Clinical Studies Groups provide strategic oversight, support and monitor development and delivery of specialty research across the UK. The groups aim to ensure high quality delivery of a well-designed and balanced mix of commercial and non-commercial research, and that this is available to all NHS patients.

CSGs exists for the following neurodegenerative disorders:

• Motor Neurone Disease CSG
• Huntington's disease CSG

Portfolio Development Groups (PDGs)

Portfolio Development Groups are composed of experienced researchers from diverse disciplines and lay members within the specialty field that promote the development of innovative ideas into funded research. The Groups identify research gaps as well as support Writing Groups to formulate and prepare grant applications for clinical studies.

PDGs exist for the following neurodegenerative disorders:

• Dementia PDG
• Parkinson's Disease PDG

Who we are

As well as providing research delivery staff, we also bring together highly engaged NHS consultants and clinical academics from top UK universities, bringing both clinical and academic expertise to your research. Our experts in the CRN Specialty Group can advise on delivering your dementias and neurodegeneration study in the NHS and in particular geographic regions.

There are three CRN National Specialty Leads for dementias and neurodegeneration. Read more about them on our Experts tab.

They are supported by local specialty leads in each of the 15 NIHR Local Clinical Research Networks.

Our collaborators and stakeholders

We have strong links with national charities. For dementia research, that includes Alzheimer's Research UK and Alzheimer's Society. For neurodegeneration, we have links with Parkinson’s UK, the Huntington’s Disease Association and the Motor Neurone Disease Association.

These relationships facilitate patient involvement in research and provide important synergies with providing service excellence across the UK. Several studies on the NIHR Clinical Research Network portfolio have been funded by these charities and, through the efforts of our Specialty Group, have recruited to time and target.

The specialty works closely with Dementias Portfolio Development Group (PDG) and Parkinson’s Disease PDG and the Motor Neurone Disease Clinical Studies Group (CSG) and Huntington's Disease (CSG).

NIHR Clinical Research Facilities

NIHR Clinical Research Facilities (CRFs) are purpose built facilities in NHS hospitals where researchers can deliver early-phase and complex studies.

Funding

Our funding programmes fund high quality research in dementias and neurodegeneration that benefits the NHS, public health and social care. We also provide career development funding awards for dementia and neurodegeneration researchers - see the careers tab for more information.

Our funding programmes

Our commissioned research programmes often seek research proposals on dementias and neurodegeneration. Most of our funding programmes also run funding calls open to research proposals on any topic (researcher-led calls), including research proposals in dementia and neurodegeneration.

We have held a themed call on dementia (2011) and also issued a highlight notice on dementia (2021). NIHR themed calls are funding opportunities focusing on a particular research topic, in which all our funding programmes participate.

• Find out more about funding opportunities in dementia and neurodegeneration

Have an idea for research in dementia and neurodegeneration? The NIHR Research Design Service can help you turn it into a funding application, offering advice on research design, research methods, identifying funding sources, and involving patients and the public.

• Find out more about the NIHR Research Design Service

Our portfolio of dementias and neurodegeneration research

You can search and view all the dementia and neurodegeneration research we’ve funded on NIHR Funding and Awards.

In addition, a number of our research programmes publish comprehensive accounts of our dementia and neurodegeneration research in the NIHR Journals Library.

Careers

The NIHR attracts, trains and supports the best researchers in dementia and neurodegeneration to tackle the complex health and care challenges of the future.

Our investment in people sustains excellent research capacity and expertise throughout clinical and non-clinical academic career pathways and provides high quality learning and development opportunities for the delivery workforce in our infrastructure.

Funding research careers

The NIHR Academy is responsible for the development and coordination of NIHR academic training, career development and research capacity development.

There is a wide range of NIHR training and career development awards available at different career stages, from pre-doctoral through to Research Professorships. These awards comprise both personal awards, which can be applied for directly with the NIHR, and institutional awards, which should be applied for through the host institution.

• Find out more about our training programmes

Supporting the delivery workforce

Dementia Researcher: a network for those new to research

Being new to research can be incredibly rewarding and challenging too. It is as much about new discoveries, collaborations and ideas as it is about the pressure to publish papers and the competition for funding.

The Dementia Researcher website  is a place to go to when you need some inspiration or want to get advice from others new to research and leading experts

Case study: A nurse Principal Investigator

Helen Robinson is an Advanced Nurse Practitioner from Middlesbrough, who became one of the first Nurses to become a Principal Investigator of a research study in her Trust in Tees, Esk and Wear Valleys. We interviewed Helen to find out how and why she got involved in clinical research.

Read Helen's story

• Find out about our career development support for healthcare professionals

Support

The NIHR funds and supports world-class experts in mental health. Find out more about collaborating with our experts.

In addition, our experts can advise on delivering your mental health study in the NHS or in other health and social care settings. Get our expert advice on delivering your research.

NIHR Biomedical Research Centres

NIHR Biomedical Research Centres (BRCs) are collaborations between world-leading universities and NHS organisations that bring together academics and clinicians to translate lab-based scientific breakthroughs into potential new treatments, diagnostics and medical technologies.

The following BRCs undertake research in dementias and neurodegeneration:

• NIHR Cambridge Biomedical Research Centre
• NIHR Imperial Biomedical Research Centre
• NIHR Maudsley Biomedical Research Centre
• NIHR Sheffield Biomedical Research Centre
• NIHR Newcastle Biomedical Research Centre
• NIHR Oxford Biomedical Research Centre
• NIHR University College London Hospitals Biomedical Research Centre

NIHR Applied Research Collaborations

NIHR Applied Research Collaborations (ARCs) support applied health and care research that responds to, and meets, the needs of local populations and local health and care systems.

The following ARCs undertake research in dementias and neurodegeneration: 

• NIHR Applied Research Collaboration Kent, Surrey and Sussex
• NIHR Applied Research Collaboration South West Peninsula
• NIHR Applied Research Collaboration Wessex

The ARCs also work together nationally on a number of research areas, led by specific ARCs. The NIHR ARC Wessex leads the national ARC effort on ageing and dementia research. 

NIHR Medtech and In vitro diagnostics Co-operatives

NIHR Medtech and In vitro diagnostics Co-operatives (MICs) build expertise and capacity in the NHS to develop new medical technologies and provide evidence on commercially-supplied in vitro diagnostic tests.

The following MICs undertake research in dementias and neurodegeneration:

• NIHR Mental Health MedTech Co-operative
• NIHR Devices for Dignity MedTech Co-operative

NIHR Dementia Translational Research Collaboration

The NIHR Dementia Translational Research Collaboration (D-TRC) aims to collaborate with industry, academia and charities in this field. It is open to developing partnerships with companies to carry out experimental medicine investigations in dementia and related diseases.

• Find out more about the NIHR Dementia Translational Research Collaboration

NIHR Clinical Research Network

The NIHR Clinical Research Network (CRN) supports set up and delivery of clinical research in the NHS and in other health and care settings. Find out more on the delivery tab.

Experts

The NIHR funds and supports world-class experts in dementias and neurodegeneration. In addition, our experts in the NIHR Clinical Research Network (National Specialty Leads) can advise on delivering your dementias and neurodegeneration study in the NHS or in other health and social care settings.

• Get our expert advice on delivering your research

National Specialty Lead

There are two CRN National Specialty Leads for dementias and neurodegeneration.

Professor John O’Brien is Professor of Old Age Psychiatry at the University of Cambridge and Honorary Consultant Old Age Psychiatrist. He has research interests in the application of imaging biomarkers in dementia and late life depression, and has particular expertise in Lewy body and vascular dementias. He has published over 450 peer reviewed scientific papers on these topics, and is a NIHR Emeritus Senior Investigator.

• Read more about Professor O’Brien

Dr Camille Carroll is an academic consultant neurologist at Plymouth University Peninsula Schools of Medicine and Dentistry.
In 2007 Dr Carroll was awarded a Medical Research Council fellowship. This allowed her to develop research interests investigating neuroprotective mechanisms in cell culture models of Parkinson's disease. Her current focus is on early disease detection and clinical trials of neuroprotective interventions in Parkinson's disease.

• Read more about Professor Carroll

Dementia Translational Research Collaboration Chair

Professor David Burn chairs the NIHR Translational Research Collaboration for Dementia. He is also Emeritus NIHR Senior Investigator and Director of NIHR Newcastle Health Innovation Partners Academic Health Centre. 

• Read more about Professor Burn

Public involvement

We engage with and involve patients, carers, service users and members of the public in order to improve the reach, quality and impact of research in.

Have your say in research

We involve patients, carers, service users and members of the public in our national research funding and support activities, including in dementias and neurodegeneration research.

• Find out more about getting involved in our national research funding and support activities

The researchers we fund also involve patients in planning and delivering their dementias and neurodegeneration research.

• Find out how to get involved in NIHR-funded research in your local area

Involvement opportunities across the NIHR

The NIHR Oxford Health Biomedical Research Centre offers several ways to get involved in research on mental disorders and dementia, from joining a research strategy group to attending meetings on new research projects.

• Find out how you can shape our research opportunities

Our Local Clinical Research Networks involve people in dementias and neurodegeneration research taking place in your local area.

• Find your Local Clinical Research Network to see how you can get involved

Take part in dementia research

Join Dementia Research is a nationwide service that allows you to register your interest in volunteering for vital dementia research studies. Once signed up you’ll be alerted to appropriate studies in your area. It’s also possible to register on behalf of someone who may not be able to register themselves, acting as a representative.

We also offer specific advice on taking part in research on Motor Neurone Disease and Parkinson's Disease.

Be Part of Research is an online service that lists opportunities to take part in dementias and neurodegeneration research across the UK.

• Find out about opportunities to take part in dementia research
• Find out about opportunities to take part in neurodegeneration research