A landmark research initiative attempting to lay the foundation for the UK’s first genetic screening programme for brain aneurysms—potentially reshaping how the country’s National Health Service (NHS) identifies and manages this “often overlooked” condition—is set to get underway soon.
Participant recruitment in the study, dubbed ‘ROAR-DNA’, is scheduled to begin in Autumn 2025.
This UK-based, multicentre research project brings together researchers from University Hospital Southampton NHS Foundation Trust (UHS) and the University of Southampton (Southampton, UK), and is said to be the first study of its kind and scale to investigate the genetic markers that may predispose people to developing brain aneurysms.
As per a press release from Hereditary Brain Aneurysm (HBA) Support—a UK charity supporting patients and families affected by brain aneurysms—most aneurysms are sporadic, one-off events, but there is evidence of a strong genetic component to their development. Brain aneurysms often run in families, with more than 16% of patients with an aneurysm having an affected parent or sibling. Despite these data, no genetic screening programme currently exists, and little is known about the genes that impact aneurysm growth and rupture, the HBA Support release adds.
The four-year ROAR-DNA project aims to close this gap by collecting and analysing genetic data from 6,000 patients with brain aneurysms, and comparing this against data from patients without brain aneurysms, working in tandem with the existing ROAR study—which is already tracking more than 20,000 patients across the NHS.
“Brain aneurysms typically produce no symptoms but can burst without warning with catastrophic consequences,” said Diederik Bulters (UHS/University of Southampton, Southampton, UK), chief investigator of the ROAR study. “The reality is most brain aneurysms will never rupture, but we currently have no way of identifying the minority that will. We are making great strides in understanding clinical risk factors but our ability to understand the genetics behind their development, and understand why they rupture, remains surprisingly limited for a condition that potentially impacts 3% of the UK population.
“ROAR-DNA is designed to fill the critical gap in our understanding of genetic risk—offering a more complete picture of who is most vulnerable to aneurysms. This pioneering research is only possible within the NHS, thanks to its unique infrastructure, trusted access to secure patient data, and the generous support of the Medical Research Council. It could pave the way for targeted NHS screening programmes that identify and monitor high-risk individuals before an aneurysm becomes life-threatening, and open up new possibilities for therapeutic treatment to reduce the need for invasive surgery.”
“This research is urgently needed. My family has been devastated by this condition, and I was treated seven years ago for a growing brain aneurysm. I’m just one of thousands left wondering whether my family history puts other close relatives at risk,” added Rebecca Middleton, chief executive officer (CEO) of HBA Support and the patient lead on this project. “Until now, we’ve had no definitive answers. ROAR-DNA could transform that—by uncovering which genes matter, we will be one step closer to potentially screening through a blood test, enabling earlier intervention and care, new medicines and drugs, and personalised pathways for those patients and families at an increased risk. Ultimately, this groundbreaking and world-leading study could save lives and heartache. For patients, this is not just about science; it’s about hope, reassurance, and the possibility of preventing future tragedies.”
The ROAR study—which announced in April 2025 that it had reached a key milestone of achieving its recruitment target of more than 20,000 patients—is claimed to be the largest study in the world focused on the management of patients with unruptured intracranial aneurysms. The release goes on to note that the enhanced models emerging from the ROAR studies aim to provide patients and clinicians with clearer, evidence-based pathways for care, with results due to be published later this year.
