To find out more about current Dementia and Neurodegeneration studies you can view a list of studies on the NIHR Clinical Research Network Portfolio Database
The NIHR Clinical Research Network Dementias and Neurodegeneration Specialty has been very successful in recruiting patients to studies. With our membership extending throughout the UK we can facilitate and recruit to a wide range of diverse studies. In addition to this, Join Dementia Research has been established to facilitate recruitment to ethically approved dementia research studies taking place in the UK.
As the most integrated clinical research system in the world, the NIHR supports research studies through our funding programmes, training and supporting health researchers, and providing world-class research facilities. We also support dialogue between the life sciences industry and charities to benefit all, and facilitate the involvement of patients and the public to make research more effective.
Last year (2017/2018) the NIHR supported 327 studies on dementias and neurodegeneration. The NIHR supported these studies through our funding programmes and our research schools and units. We also support dementias and neurodegeneration research through our research infrastructure and our training and career development awards for researchers, and through Join Dementia Research.
There is currently no cure for dementia or AD, but there are treatments which can modestly improve symptoms - including cholinesterase inhibitors (such as donepezil) and glutamate antagonists (such as memantine). However prior to the DOMINO-AD trial, there was limited evidence to guide treatment decisions as AD patients advanced beyond the mild to moderate severity stages.
DOMINO-AD set out to investigate whether patients with moderate to severe AD would have better cognitive and functional outcomes after 12 months treatment with donepezil, memantine or a combination of the two. The trial assessed whether AD patients with moderate to severe AD, who were already receiving donepezil, benefited from continuing treatment and whether initiating memantine at this stage conferred benefits.
DOMINO-AD was the first trial to demonstrate the value of continued drug treatment for patients with moderate to severe AD. It provided vital evidence used by the National Institute for Health and Care Excellence (NICE) in their dementia guidance, published June 2018: ‘Dementia: assessment, management and support for people living with dementia and their carers’.
As a result of the trial, the NICE guidelines recommend that clinicians should not stop the use of cholinesterase inhibitors, such as donepezil, because of dementia severity (i.e. progression to the moderate to severe point). The guidelines also recommend that clinicians should consider combined memantine and cholinesterase inhibitors for patients with moderate AD, and offer the dual treatments to patients if they have severe disease (for those already taking an acetylcholinesterase inhibitor).
The risks of developing dementia and visual impairment both increase with age. The PrOVIDe study, funded by the NIHR Health Services and Delivery Research (HS&DR) Programme, was designed to better understand the prevalence of visual impairment in people with dementia, and to identify how eye care can be improved for people with dementia. The NIHR Clinical Research Network (CRN) provided a package of support throughout the study, from development, through setup and delivery, to study closure.
The findings have led to proposals to ensure eye care is recognised as being as important to those with dementia as the general population. The project has also lead to further activity prioritising areas for future research for people with both dementia and visual impairment.
Many people with neurological conditions - such as motor neurone disease, amyotrophic lateral sclerosis and spinal muscular atrophy - develop neck muscle weakness. This can lead to pain and restricted movement, as well as problems with swallowing, breathing and communication.
A collaborative project led by the University of Sheffield and the NIHR Devices for Dignity MedTech Co-operative, in partnership with the Motor Neuron Disease Association (MNDA) charity and Sheffield Hallam University, obtained funding from the NIHR Invention for Innovation (i4i) Programme to work in collaboration with patients, carers, designers, physiotherapists and a consultant neurologist to develop a new orthotic collar.
The project has developed the Head Up Collar, a CE marked class 1 medical device that is currently being trialled with patients with neck weakness as a result of their neurological condition across 10 sites in the UK and Ireland.
People with Parkinson’s disease often have problems with their speech as well as difficulty moving. Speech and language therapy is likely to help, but to date there is little scientific evidence as to which kind of treatment would be most effective.
The NIHR Clinical Research Network (CRN) Dementias and Neurodegeneration (DeNDRoN) Specialty recently assisted the team working on the Parkinson’s Disease COMM study, a pilot project looking at the cost-effectiveness of different speech and language therapy treatments for people with Parkinson's Disease.
The NIHR Clinical Research Network (CRN) Dementias and Neurodegeneration (DeNDRoN) Specialty supported a study sponsored by University of Manchester titled ‘SAVE-D’ (South Asian Voices Enabling Dementia Care). This study looked at the challenges that South Asians in Greater Manchester faced, when presented with recognising and addressing memory problems and dementia.
The collaboration was a success and, together with DeNDRoN’s support, the team effectively recruited a strong cohort of South Asian individuals from local NHS Trusts and community settings, surpassing the original recruitment target of 180 participants.
Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease or Lou Gehrig’s disease, is an uncommon neurodegenerative disease that affects the brain and nerves and causes weakness that gets worse over time. The DiPALS study, funded by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) Programme, was designed to establish the safety and efficacy of diaphragm pacing with the NeuRx/4 Diaphragm Pacing System in patients with respiratory muscle weakness due to ALS. The NIHR Clinical Research Network (CRN) provided a package of support throughout the study, from development, through setup and delivery, to study closure.
The trial results showed that the addition of diaphragm pacing to standard care with non-invasive ventilation was associated with decreased survival in patients with ALS. The results suggest that diaphragmatic pacing should not be used as a routine treatment for patients with ALS in respiratory failure.
Professor Gill Livingston is a researcher at the Mental Health of Older People Unit, University College London (UCL), and is leading the MARQUE study, a major longitudinal study aimed at improving management of agitation and raising quality of life for people with dementia living in care homes.
Assessing a person with dementia in a research study requires a high level of skill and expertise. Having experienced raters available can affect whether the life-sciences industry choose to run a study in the UK. Insight Monthly investigates an innovative programme to increase the number of raters in the Clinical Research Network.
Reducing unplanned acute hospital care for people with dementia has potential to benefit the patients themselves, as well as their caregivers and the wider health care system. But surprisingly little is known about the frequency with which people with dementia have unplanned hospital attendances.
Researchers at King's College London investigated emergency department attendance during the last year of life for people with dementia, using the NIHR Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS). CRIS is a facility that enables research use of Electronic Health Records (EHRs) from the South London and Maudsley NHS Trust, one of the largest mental health care providers in Europe.
Of the 5,000 people who had a clinical diagnosis of dementia and who died, 79% had at least one emergency department attendance during their last year of life. Frequency of attendance increased closer to death: a quarter of all attendances occurred in the last month of life.
Find out more about NIHR research into dementia in our 2017 campaign to mark World Alzheimer’s Month.
You can find out more about dementias and neurodegeneration studies in your area through the UK Clinical Trials Gateway.