Traumatic brain injury, or TBI, is a leading cause of death and disability in people under 40 in the UK. It can cause a range of serious and lifelong health issues for people who survive, including dementia, epilepsy and poor mental health.
Until now, data collected by individual research projects investigating TBI has rarely been used outside the original study, even though it provides a potentially rich resource for understanding TBI and advancing its clinical care.
This lack of coordinated use of data has slowed progress in treating and caring for people experiencing TBI.
Bringing together experts
To address this an initiative to establish a UK-wide research platform, UK-TBI REpository and data PORTal Enabling discoveRy (TBI-REPORTER), led by the University of Cambridge is being jointly funded by:
- the Medical Research Council (MRC)
- the National Institute for Health and Care Research
- the Ministry of Defence
- Alzheimer’s Research UK
TBI-REPORTER will bring together leading experts from across the UK to enable research into TBI, including concussion, and across the lifespan from children to older ages.
It will also support research in previously under studied populations, including:
- homeless people
- victims of domestic violence
Better coordination of data
To do this, TBI-REPORTER will collaborate with Health Data Research UK. It will build on successes of wider NHS and population-based UK research, such as UK Biobank and Dementias Platform UK, to bring together rich datasets from existing studies in TBI.
It will also coordinate research data collection and clinical studies going forward. All of this will be made available to UK and international researchers to accelerate research in TBI and its impact on lifelong health.
The hope is that this will lead to more people being treated effectively as doctors are able to better predict how a certain injury is likely to affect a patient with TBI and offer them individualised care.
Working with industry
The platform will also assist academic and industrial partners to develop better diagnostic tests and treatments for TBI.
To facilitate this, the TBI-REPORTER platform will establish a network of research-ready NHS specialist neuroscience hospitals primed to trial innovative ways of diagnosing and treating TBI.
Brain injury survivor James Piercy said:
As one of the estimated 1 million people living with the results of a traumatic brain injury, I welcome this new initiative which promises to improve diagnosis and treatment of TBI: the ‘hidden disability’.
Improving treatment and health outcomes
Secretary of State for Science, Innovation and Technology Chloe Smith said:
Traumatic brain injuries are a leading cause of death and disability in people under 40 in the UK and survivors often endure a lifetime of physical, emotional, and cognitive challenges.
This funding will bring together leading experts and support studies into the long-term consequences of traumatic brain injuries, allowing researchers to identify patterns and develop tailored treatments, with the potential of saving and massively improving the lives of those with such injuries. It is yet another example of how the UK’s science sector is improving treatment and health outcomes for Britons across the country.
An ambitious platform
Project lead Professor David Menon, Head of the Division of Anaesthesia at the University of Cambridge, said:
It is a privilege to lead this ambitious platform, which brings together a breadth of experts and draws on the lived experience of TBI survivors and their families, to improve care of traumatic brain injury.
We also believe that our work, in combination with that of international partners, will re-energise drug development in TBI and deliver new treatments for patients.
Unique scientific strengths
Professor John Iredale, Executive Chair of MRC, part of UKRI, added:
We recognise the devastating impacts traumatic brain injury can have for its survivors and those who care for them, and are determined to improve the status quo.
This award will capitalise on the UK’s unique scientific strengths to see research into TBI accelerated on a scale not seen before.
This will lead to the discoveries we need to give survivors of TBI all around the world a much more hopeful future.
A collaborative approach
Dr Susan Kohlhaas, Director of Research at Alzheimer’s Research UK, said:
Over a million people in the UK are living with long-term symptoms of a traumatic brain injury, and evidence suggests that exposure to such an injury can increase dementia risk.
At Alzheimer’s Research UK, we believe it is only by bringing people from different backgrounds together through collaborative approaches that we’ll begin to solve the major challenges in treatment and diagnosis of TBIs.
The TBI-REPORTER programme will be fundamental in improving our understanding of how brain injury contributes to dementia risk so we can prevent dementia in the future.
TBI-REPORTER represents a collaboration of leading institutions from across the UK, and will be coordinated by:
- University of Cambridge
- University of Glasgow
- The University of Sheffield
- Imperial College London
- Swansea University
It also includes close engagement with the public, patients, and their families through the UK Acquired Brain Injury Forum (UKABIF).
The TBI-REPORTER platform executive committee are:
- Professor David K Menon, University of Cambridge (programme lead)
- Ms Chloe Hayward, UKABIF
- Professor Peter J Hutchinson, University of Cambridge
- Professor Fiona Lecky, The University of Sheffield
- Mr James Piercy, UKABIF
- Professor David Sharp, UK Dementia Research Institute at Imperial College London
- Professor William Stewart, University of Glasgow
- Professor Simon Thompson, Secure eResearch Platform at Swansea University and Dementias Platform UK
The platform will include:
1. A data hub to collate and curate TBI research data at scale
This will integrate with existing infrastructure, in partnership with Dementias Platform UK (DPUK), and Heath Data Research UK They will establish linkage with existing UK NHS TBI datasets, including:
- Trauma Audit and Research Network
- Intensive Care National Audit and Research Network
- UK Rehabilitation Outcomes Collaborative
Close collaboration with DPUK will allow seamless adoption of procedures and protocols allowing investigators, for the first time, streamlined access to large linked TBI datasets, and to international partners through the International Initiative for TBI Research.
2. A national biomarker resource
This will draw on expertise from both TBI and dementia research and link to a new data hub to:
- coordinate the collection and processing of human blood and other samples at scale, including those obtained via advanced techniques, such as dialysis fluid from brain pressure monitoring in critically injured patients with TBI (brain microdialysis)
- coordinate and standardise brain imaging data collection and analysis (computed tomography, magnetic resonance and positron emission tomography)
- standardise collation and archiving of postmortem and surgical tissue samples in specialist tissue banks
3. An experimental medicine network of research-ready NHS specialist neuroscience hospitals
These will have explicit early ‘proof of concept’ study capabilities to support research into novel TBI diagnostic and treatment approaches.
These will initially comprise six pathfinder centres, but eventually expand to 12 to 16 hospital sites, selected by potential to study advanced brain imaging, biomarkers and TBI treatments.
The network will develop a prospective proof of principle cohort of people with TBI. It will gather extensive banked clinical and biological data to demonstrate the platform is capable of delivering challenging proof of concept studies which will develop and refine future TBI research.
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