What is the ROAR Study?

  The Risk of Aneurysm Rupture (ROAR) Study aims to better understand how likely it is for a brain aneurysm to burst (rupture). We hope to give future patients clearer answers about their own risk and help them make more confident decisions about whether to treat their aneurysm or not.

Currently, when patients are found to have an unruptured brain aneurysm, doctors carefully weigh up the likelihood of rupture against the risks of treatment. Available risk prediction models for unruptured aneurysms are limited in their scope and it is challenging to identify which aneurysms will go on to rupture and which will remain stable. By developing more accurate and personalised risk prediction models, the ROAR study will offer help for both patients and doctors.

Better Informed Patients: With more precise risk assessments, patients will have clearer insights into their individual risk of aneurysm rupture, empowering them to make more informed decisions about their healthcare.

Optimised Treatment Decisions: The study will help ensure that high-risk aneurysms, which require treatment, are treated appropriately. At the same time, it will help prevent unnecessary treatments for low-risk aneurysms, reducing patient exposure to potential complications and risks.

Reducing Anxiety and Uncertainty: With more clear-cut, evidence-based decision-making, patients will experience reduced anxiety. Knowing that their treatment plan is tailored to their specific risk profile will bring peace of mind.

Addressing Other Risk Factors: The study will also offer valuable insights into other health factors that could impact aneurysm rupture risk, such as blood pressure control, medications, and hormone replacement therapy. By understanding these additional factors, patients and their doctors can better manage their overall health and reduce the risk of aneurysm rupture.

By studying genetic factors, ROAR-DNA will help identify who needs screening, who may benefit from treatment, and how we might prevent rupture in the future. This will lead to more personalised care, fewer unnecessary scans, and new possibilities for medical treatments—helping patients make more informed and confident decisions about their health.

Doctors have long thought that the shape and blood flow within a brain aneurysm might help predict whether it will burst. However, the current models we use to assess that risk don’t make full use of the detailed information we can get from modern scans. ROAR-FLOW is a major research study that will use advanced imaging and long-term patient follow-up to better understand what makes some aneurysms more dangerous than others. By studying how aneurysms change over time—such as how they grow or change shape—ROAR-FLOW aims to spot the early warning signs of rupture. This will help doctors offer more personalised monitoring and treatment plans, giving patients with unruptured aneurysms better care and peace of mind.

ROAR-GP helps improve how we predict aneurysm rupture by linking existing data to GP records. This lets researchers track changes in patients' health over time, such as blood pressure, medications, and lifestyle factors, and explore new risk factors, such as menopause and hormone treatments. By including this broader, real-world information, ROAR-GP will make risk models more accurate and personalised. This means better support for patients and doctors when deciding how to manage unruptured aneurysms, especially in women, who are more commonly affected.

We will be using medical records to identify patients with an unruptured aneurysms. We will then search national databases for hospital admissions and deaths to identify anyone who had a rupture from their aneurysm after diagnosis. Patients will not be directly involved in the study, it will all be done using existing medical records. 

  Your identifiable details will be encrypted and securely transferred to the co-ordinating unit to search the national admissions databases. After this is done your identifiable details will be deleted from their records and only known to your neurosurgery team. 

  No consent is being sought because people who have suffered a bleed from their aneurysm might be less likely to be physically able to provide consent than people who have not suffered a bleed. Therefore if individual consent was required, the study would underestimate the risk of an aneurysm bursting. This would mean that future decisions for patients would be made based on incorrect information. 

ROAR has received a favourable opinion from a Research Ethics Committee (REC) (IRAS number 287144) and has support from the Health Research Authority following advice by the Confidentiality Advisory Group (England and Wales) under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 to conduct the study without study-specific consent (CAG reference number 21/CAG/0033). 

We will also be checking the records held with NHS Digital on patients who have registered as part of the National data opt-out for research. Anyone who has already registered  will not be included in the ROAR study. If you wish to register to not have your data included in research then please visit: National data opt-out - NHS Digital. 

If you want to opt of of this study in particular then please inform the Principal Investigator for your neurosurgery unit. Their contact details can be found below. If you cannot find your neurosurgery unit on this this then they are not currently involved in this study.  

The results of the Risk of Aneurysm Rupture (ROAR) study will be published in medical journals no earlier than 2025.