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World-first UK genetics study could transform NHS care for brain aneurysms

A new research initiative aims to lay the foundation for the country’s first genetic screening programme for brain aneurysms—potentially reshaping how the NHS identifies and manages a life-threatening but often overlooked condition that can devastate families for generations.

The ROAR-DNA Project, a UK-based multicentre research project bringing together researchers from University Hospital Southampton NHS Foundation Trust (UHS) and the University of Southampton, is the first study of its kind and scale to investigate the genetic markers that may predispose people to develop brain aneurysms.

Brain aneurysms are balloon-like swellings in blood vessels of the brain, found in approximately 3 per cent of the UK population, that’s over 2 million people. While most aneurysms remain stable and harmless, around 1 in 100 will rupture, usually without warning, causing a subarachnoid haemorrhage (SAH)—a type of stroke that can be fatal or severely disabling.

In the UK, an estimated 3,000 to 5,000 people experience a brain aneurysm rupture each year, with around half of these cases proving fatal.

Most aneurysms are sporadic, meaning they are one-off events, but there is evidence of a strong genetic component to the development of intracranial (brain) aneurysms. They often run in families with over 16 per cent of patients with an aneurysm having an affected parent or sibling.

Despite this significant data, no genetic screening programme currently exists, and little is known about the genes that impact aneurysm growth and rupture.

The UK four-year ROAR-DNA Project aims to close that gap by collecting and analysing genetic data from 6,000 patients with brain aneurysms, comparing this against data from patients without brain aneurysms, working in tandem with the existing ROAR Study, which is already tracking over 20,000 patients across the NHS—the largest study of its kind globally.


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