The ROAR-DNA study is a national NHS research study being led by a team at University Hospital Southampton NHS Foundation Trust which aims to improve how we identify and treat brain aneurysms. Your help could make a real difference to the many people living with brain aneurysms in the UK today.

It’s funded by the National Institute for Health Research (NIHR) and the Medical Research Council (MRC), with approval from the Health Research Authority (HRA) and the Confidentiality Advisory Group (CAG).

What is the study about?

Brain aneurysms are small swellings of blood vessels in the brain. Most cause no symptoms or problems, but some can burst and lead to serious bleeding in the brain called a subarachnoid haemorrhage (SAH).

1 in 30 adults have a brain aneurysm. They sometimes appear to affect people at random and sometimes run in families.

The ROAR-DNA study aims to better understand the genes that:

Cause some people to develop brain aneurysms.
Help explain why only some aneurysms go on to burst.

This may help doctors in the future to:

Identify people who should be offered a brain scan to screen for aneurysms.
Decide who may benefit from treatment if an aneurysm is found.

To do this, we need to compare the DNA (genetic material) of people who do have aneurysms with people who do not. DNA can be collected easily at home from a saliva sample using a simple kit.

To find out more please go to www.roarstudy.co.uk.

How does the study work?

People across the UK are being invited to take part in ROAR-DNA by text message or letter.

The text message contains a link to the full patient information sheet and online consent form.
The letter contains the same information in paper form.

People choosing to take part will return a consent form electronically or by mail. They will then be sent a saliva collection kit with clear instructions on how to collect and return their sample.

Why have I been contacted?

If you have been contacted about the study this is because your NHS records show that you have had a brain scan in the past. From that scan, we can tell whether you have a brain aneurysm or not. As we need to compare people with brain aneurysms with those that do not, if you have had such a scan you can take part in the study.

Please note:

We are contacting over 20,000 people as part of this national study.
You have not been contacted because of any new concerns about your health.
Taking part is completely optional, and will not affect your care in any way.

What should I do next?

If you have received a text message about ROAR-DNA, please return to the message and click the link. It will take you to the full patient information sheet and the online consent form. If you would prefer a paper version email roar@uhs.nhs.uk or call 0238 120 5311 (Monday to Friday, 9am to 5pm).

If you have already received a letter, please read the enclosed documents carefully and return the consent form if you want to participate. For questions or queries on the consent form, please call 0238 120 5311 (Monday to Friday, 9am to 5pm).

Thank you for considering taking part and helping us improve how brain aneurysms are identified and treated in the future.

What if I don’t want to be contacted again?

If you don’t want to be contacted again about ROAR-DNA research study please contact roar@uhs.nhs.uk with your name and date of birth. We’ll then remove you from our list.

If you don’t want your medical records used for medical research you can choose how your data is used at www.nhs.uk/your-nhs-data-matters.