A new research platform is set to transform the way brain injury survivors are diagnosed and treated in the UK.
The TBI-REPORTER project, backed by £9.5million funding, 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 prisoners, homeless people and survivors of domestic violence.
UKABIF will play a vital role, leading the Patient and Public Involvement and Engagement (PPIE) part of the initiative.
Traumatic brain injury is a leading cause of death and disability in people under 40 in the UK, and is a fast-growing condition among over 65s, and can cause a range of lifelong health issues and implications.
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.
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 has been created.
TBI-REPORTER will collaborate with Health Data Research UK and will build on 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.
The initiative is jointly funded by the Medical Research Council (MRC), National Institute for Health and Care Research, Ministry of Defence and Alzheimer’s Research UK.
The PPIE Panel will be co-chaired by UKABIF trustee, James Piercy, and UKABIF chief executive, Chloe Hayward.
“We are delighted to be part of this exciting and potentially life-changing research platform. We know that there is still so much to do to improve the diagnosis and treatment of a brain injury.
“UKABIF has a broad network linked to many individuals, patient groups and third sector organisations.
“We will work to ensure the voices of patients, families and carers are heard and used to shape the research. Their experiences are crucial to the whole initiative.
Brain injury survivor James Piercy said: “As one of the estimated one 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’.”
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.”
Professor John Iredale, executive chair of the 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.”
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.”
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