What is the aim of this research project?
The aim of this project is to learn more about the experiences of families with a strong family history of brain aneurysms. You may have been given a formal diagnosis of Familial Aneurysm Syndrome or told by a doctor that they run in your family. Very little is known about how families with a strong family history of brain aneurysms are personally affected and what support they would find helpful.
What does this research involve?
Taking part in this research project involves a one-to-one video or telephone chat to discuss your experiences and the experiences of your family. This is a one-off interview, which will last around 1 hour. All answers will be used anonymously and kept completely confidential.
If you are interested in taking part or would like to read about this project further, please email georgele1@cardiff.ac.uk.
Why does this project matter?
This project is an opportunity for families with a strong family history of brain aneurysms to share their experiences and help to increase our understanding of the impact of living with Familial Aneurysms. These experiences will also help us to understand how families can be better supported. The results from this project will be used by the patient support group, Hereditary Brain Aneurysm Support, to benefit families with a strong family of brain aneurysms in the future. They will look at the findings and see how they can help influence better patient care. No names, personal or identifiable information will be included or shared.
Am I eligible to take part in this project?
Anyone in the UK who is at risk of hereditary brain aneurysms and their partners/spouses can take part. This means you could be:
An individual that has been diagnosed with a brain aneurysm AND also has one or more first degree relative(s) (a parent, a sibling or a child) with a proven brain aneurysm.
An individual who is at risk of hereditary brain aneurysms. This includes:
Individuals that have two or more first degree relatives (a parent, sibling or child) with proven brain aneurysms.
Individuals who have had their family history reviewed by a doctor and have been told that they are at a higher risk of hereditary brain aneurysms.
Eligible individuals may or may not have had screening for brain aneurysms.
A partner or spouse of an individual with a hereditary brain aneurysm, who has one or more first degree relative(s) (a parent, sibling or a child) with a proven brain aneurysm.
If you have any questions about your eligibility or about the project, please contact georgele1@cardiff.ac.uk for further information.
Who is running this research project?
This research project is being led by Lily George, a Cardiff University MSc student, for their research dissertation, alongside the patient support group, Hereditary Brain Aneurysm Support.
Thank you for taking the time to read about this research project.
If you are interested in taking part or would like to read about this project further, please contact Lily to request a recruitment pack. Please email: georgele1@cardiff.ac.uk
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