• Risk of Aneurysm Rupture (ROAR) is a research study to predict which brain aneurysms are at risk of bursting.
• It will be conducted in UK neurosurgical units by reviewing existing medical records.
• If you do not want your records used you can opt out.
The Risk of Aneurysm Rupture (ROAR) Study aims to establish the risk of rupture of brain aneurysms. It will identify patients with an unruptured aneurysm and record who went on to suffer a bleed (subarachnoid haemorrhage). The results of this study will be used to help future patients predict the risk of their aneurysm bursting (rupturing) and decide what is the best way to manage their aneurysm.
We will be using medical records to identify patients with an unruptured brain aneurysm. 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 2023. We will also produce an online calculator from the results which you can use to work out your own risk, should you wish to.