Dementias Platform UK - Participants wanted for most in-depth study of early Alzheimer’s disease
Researchers in Oxford are seeking local volunteers to take part in the world’s most detailed study into Alzheimer’s disease.
Announced last month, the Deep and Frequent Phenotyping (DFP) study aims to tackle the challenge of diagnosing and tracking Alzheimer’s disease in its earliest stages – often decades before symptoms start to show.
DFP will recruit 250 participants from across the UK who are over 60 and in good health, but with a family history of dementia. Volunteers will undergo a range of existing and new tests over a year-long period, including brain scans, cognitive and memory tests, scans of brain magnetic fields, retinal imaging, blood tests, and the use of wearable technology to measure movement, gait and ongoing cognitive abilities. This will be the most comprehensive set of assessments ever completed in this group of people.
By providing this data, participants will help scientists in their quest to identify the best early warning signs of this devastating disease – a crucial step towards prevention – as well as helping track response to treatments, which has been missing to date.
Recruitment and testing will take place at various locations around the UK, and researchers are currently seeking participants in the Oxford area.
Dr Vanessa Raymont, of the Oxford-based Dementias Platform UK partnership and Oxford University’s Department of Psychiatry, is chief investigator of the DFP study. She said: ‘Many trials of new Alzheimer’s treatments fail because they aren’t delivered early enough in the disease process. The DFP study has been developed to address this problem by identifying better and earlier signs of Alzheimer’s progression.
‘What makes DFP unique is – as the name of the study suggests – the depth and frequency of the tests we’ll be carrying out to chart the progression of Alzheimer’s disease. Volunteers who are eligible to take part in the study will undergo a range of assessments, generating a huge amount of data that we hope can be used to assist with the early detection of Alzheimer’s and the development of new drugs.’
Gillian Brown (64), from Banbury, was the first participant to arrive for initial screening tests at the NIHR Oxford Cognitive Health Clinical Research Facility at the Warneford Hospital.
She said: ‘I volunteered for this study to help other people. My mother had dementia, and in the end she just didn’t know me. The thought of losing my own memory terrifies me, and I don’t want my children or anyone else having to see their parents or grandparents deteriorate.’
Gillian’s first visit included blood tests to determine her genotype (DFP researchers are looking for a ‘risk’ gene associated with Alzheimer’s disease called ApoE4). The screening phase will conclude with a PET scan (a type of brain scan similar to an MRI), after which researchers will know whether Gillian is a suitable participant for the full study.
She added: ‘It’s not a huge time commitment, and if you want to help fight dementia then this is one of the best ways to do it.’
The DFP study is being run from within Dementias Platform UK (DPUK), an MRC-funded public-private partnership based at Oxford University that aims to accelerate research into the diagnosis and treatment of dementia. The study itself is jointly funded by the MRC and NIHR, and the resulting data will be made available to researchers via the DPUK Data Portal – a vast, secure online resource offering access to detailed information on over 3 million individuals from more than 40 long-term studies of health known as cohort studies.
There are 850,000 cases of dementia in the UK alone, and almost 50 million worldwide, with one new diagnosis every three seconds. One in eight people died from dementia and Alzheimer’s disease in England and Wales in 2018, according to the latest public health statistics.
For more information on the DFP study, or to register your interest in taking part, visit https://www.DFPstudy.co.uk
For further information (including images), please contact Stuart Gillespie, communications officer at Dementias Platform UK, at stuart.gillespie@psych.ox.ac.uk.
Notes to editors
Dementias Platform UK
Dementias Platform UK (DPUK) is a public-private partnership funded by the Medical Research Council. DPUK’s partners – ten universities and six pharmaceutical companies – have joined forces with the aim of accelerating research towards effective treatment for dementia by improving access to data.
By bringing together records from over 40 different cohort studies – including brain scans, genetics and clinical records – DPUK is creating the world’s richest source of people data for use in research and drug development for dementia. This free-to-access resource of cohort data is available for use by any bona fide researcher who is interested in investigating dementia, whether based within a university or industry context.
DPUK facilitates safe and secure access to this data through its Data Portal and datathon series, enabling research and analyses at a scale that has not previously been possible for studies into dementia.
DPUK wishes to promote scientific research using cohort study data. It has an active programme of experimental medicine and funds research using cohort data.
https://www.dementiasplatform.uk/
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Deep and Frequent Phenotyping study
Damage in the brain can start to occur up to 15 years before we see symptoms of Alzheimer’s disease, and researchers need to be able to investigate and test interventions at this critical early stage. At present, proving that a new early-stage treatment works is difficult because any symptoms will be a long way off.
The Deep and Frequent Phenotyping (DFP) Study aims to address this by creating a database of different measures from people at risk of Alzheimer's disease. This includes regular brain scans, cognitive and memory testing, retinal imaging, blood tests and the use of wearable technology to measure movement and gait. In the future we will be able to use the data obtained through DFP to understand if early interventions are working.
DFP – jointly funded by the MRC and NIHR – is the most detailed study to date into preclinical Alzheimer’s disease for its size in the world. Work is under way to recruit 250 suitable participants for the study. The extensive programme of testing will be coordinated across eight different study centres and four imaging centres in the UK.