ROAR-DNA - A groundbreaking new genetic study exploring brain aneurysm risk

In this episode of Brain Aneurysms & Beyond, we explore the ground-breaking ROAR (Risk of Aneurysm Rupture) DNA genetic study; research that could reshape how family risk is understood in the years ahead. Guest host Vivienne Parry brings together consultant neurosurgeon Professor Diederik Bulters and clinical lecturer in neurosurgery Ben Gaastra, along with Rebecca Middleton, founder of Hereditary Brain Aneurysm Support and patient partner on the study, to unpack what this work might mean for the future of care.

This conversation balances science with humanity, explaining how a simple blood sample could one day help us understand who in a family is at risk of having a hereditary brain aneurysm, and who may not need ongoing scans. They discuss what researchers hope to learn, and how the study works in practice, including how you can get involved.

You’ll hear how this research could help make NHS screening more targeted and support better decision-making for families navigating inherited risk. Rebecca also shares her personal reasons for joining the research team as a patient partner, offering warmth, honesty and hope for future generations.

Whether you’re living with a brain aneurysm, supporting a family member, or simply wanting to understand how genetics might shape future care, this episode offers clarity, compassion, and a forward-looking glimpse at what’s possible.

 

Episode Highlights: 

[00:00] Introduction from Rebecca Middleton

[00:50] Guests Diederik Bulters and Ben Gaastra intro themselves

[01:42] Guest host Vivienne Parry intros herself

[02:17] Prof. Bulters highlights the three big problems the study aims to solve

[06:25] Rebecca Middleton on how the study could eventually mean the end of scans

[08:18] Ben Gaastra explains ROAR-DNA and why it's a landmark study

[10:53] How can people get involved with the study?

[13:40] Prof. Bulters discusses the timeline for change

[18:40] Rebecca shares how aneurysms have affected her family

[21:23] Prof Bulters explains how the study could save the NHS money

[23:51] Will the study keep participants' data safe?

[25:51] What does being a patient partner mean for HBA Support?

[27:25] Outro from Rebecca and helpful links

 

Featuring:

Vivienne Parry – Science writer, broadcaster and guest host

Rebecca Middleton – Founder of Hereditary Brain Aneurysm Support and ROAR-DNA patient partner

Professor Diederik Bulters – Chief Investigator of the ROAR Study. Consultant neurosurgeon and professor of neurosurgery

Ben Gaastra – Clinical lecturer in neurosurgery and ROAR / ROAR-DNA investigator

 

Resources:

HBA Support (Hereditary Brain Aneurysm Support) – https://hbasupport.org

ROAR and ROAR-DNA study - https://roarstudy.co.uk/

Captioned video version of this episode – https://www.youtube.com/watch?v=9NG45g5U_ig

Podcast production & editing by Rob Birnie at Made by DBM – https://madebydbm.com/podcasts