People living with dementia will help close a long-standing weakness in research – the clinical trial evidence gap – in a new home-based study.
While those over 65 account for two-thirds of illness in the UK, they make up just one-third of trial participants. This “participation gap” means many life-saving drugs are tested on populations that do not reflect the daily reality of the 1 million people living with dementia in the UK.
In a sector first, people being cared for by nationwide home care provider Cera will be able to take part in a major study; designed to capture the “silent hours” of the condition beyond clinic walls.
Cera and GlobalMinds – one of the world’s most ambitious research programmes in mental health – means the over 65’s will be empowered to shape the future of dementia prevention and treatment and help unlock a new era of precision medicine.
Dementia is now the UK’s biggest killer, claiming over 76,000 lives every year – more than heart disease or stroke. The study aims to reverse this “one size fits all” approach to prevention and treatment; with the potential impact huge. The number living with dementia is set to rise to 1.4 million by 2040.
This new study helps to address a major national mandate from the National Institute for Health and Care Research (NIHR). The NIHR recently joined forces with the UK’s leading research funders to demand the inclusion of older adults in all health and care studies who it says are being routinely sidelined from the very clinical trials meant to help them.
Cera will address this evidence gap by capturing real-world patient data – insights into cognitive health and lived experience that are currently invisible to hospital-based clinical trials and routine appointments.
GlobalMinds is a research study, run by AkriviaHealth, a UK-based specialist dementia and mental health data company. GlobalMinds will combine patient data from multiple NHS sources with DNA and other biological information to create a rich, longitudinal picture of dementia progression beyond hospital walls.
Run in partnership with Cardiff University, the study will look at the impact of current treatments and medications, but most importantly will begin looking at causal pathways that could lead to the development of more targeted treatments. This aims to unlock a new era of personalised medicine, speed up diagnoses and provide the right treatment at the right time for patients, based on their unique biology.
Dr Ben Maruthappu, Founder and CEO of Cera, said:
“For too long, dementia research has missed the very people it’s meant to help because they can’t get to a hospital. This research partnership will empower people living with dementia to actively shape the future of diagnosis, prevention and treatment – not as subjects, but as people contributing their lived experience to global science.
“Over-65s account for two thirds of illness in the UK, but only one third of clinical trial participants. Cera’s home-based care model — delivering 2.5 million care visits every month — offers a rare opportunity to reverse that imbalance by bringing research opportunities directly to those often under-represented.
“We aren’t just monitoring health; we are turning every living room into a laboratory for a cure. This will ensure that the next generation of treatments is built on the reality of people’s daily lives,” added Dr Maruthappu.
Cera, Europe’s largest provider of digital-first home healthcare, has a dataset now exceeding 250 billion patient health data points, collected from more than 100 million home care visits. This data is being used to support clinical research, disease prevention, and improved outcomes for future generations as part of Cera’s programme to advance healthcare research.
GlobalMinds extracts and analyses DNA and other biological information from blood samples saliva donated to the study by participants living with dementia or milder forms of cognitive impairment, and pairs this with responses to the study questionnaire and data from the individual’s NHS health record to make a richer, stronger dataset.
The ambition is to collect the multi-modal data from 1,000 people living with dementia, with Cera leading by expanding access to the study by bringing it to people’s homes.
The resulting dataset delivered by GlobalMinds will be a powerful tool for researchers to understand what influences the risks, development and severity of cognitive decline in each individual, and to explore targets for new treatments that could address those factors. This type of approach has been called ‘precision medicine’, where layering of medical record data on top of biological data, like genetics, results in greater understanding of how different features of people’s genetics manifest in real life and whether the variations observable are meaningful from a clinical perspective and might offer targets for new drug development.
Professor James Walters, Chief Investigator for GlobalMinds from Cardiff University, said:
“Our partnership with Cera brings out the real voices of people living with dementia captured in their everyday lives, at scale. Precision medicine has already revolutionised the treatment of cancer and other rare diseases so we are determined that GlobalMinds can bring those same breakthroughs to dementia.”
The study will cover different stages of disease, including mild cognitive impairment and broader memory issues.
Akrivia Health has access to over 6 million anonymised patient records and 900 million clinical notes through a close relationship with over 20 large secondary care NHS hospitals across England and Wales – one of the world’s most powerful resources in the sector. By augmenting the rich clinical record data with questionnaire responses and biological data like genomics in the GlobalMinds dementia participants, Akrivia can support the exciting move in mental health research towards precision medicine.
Cera’s dataset is powered by an AI-backed app used by almost 10,000 carers and nurses to log patient symptoms and information at each of Cera’s 2.5 million monthly home visits. This data gives an unparalleled window into how the UK’s population is ageing and how health conditions change over time.
See the GlobalMinds Dementia website for more information:
https://dementia.globalminds.org
