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Have your voice heard: Have you ever had screening for brain aneurysms? Tell us your experiences.

Writer's picture: HBA SupportHBA Support

Updated: Nov 25, 2024

What is the aim of this research project?

This research aims to ensure the voices of people affected by hereditary brain aneurysms are heard, helping to improve care for families like yours, both now and in the future. Learning from your experiences can help ensure screening is effective, reaches the right people, and meets the needs of those who take part.


How can you help?

We are studying the experiences of people at risk for hereditary brain aneurysms and are looking for people to take part in this research who have brain aneurysms in their family and have regular MRI or CT scans to manage their own risk.


Share your story! Tell me about your experiences via a single video interview. How did you find out about your family’s risk? Why did you choose to have screening? How has your care been?


We want to learn what matters most to families affected by brain aneurysms and how these experiences have impacted you.


Get involved!

All that's involved is a online or telephone chat lasting no longer than one hour. All of your answers would be used anonymously and kept completely confidential.


All you need to do to take part is send an email to sharpeo1@cardiff.ac.uk and fill out a consent form and email this back.


Am I eligible to take part in this project?

You can take part if:

  • You are 18 years old or older

  • You have had screening for brain aneurysms because a doctor thinks your family may be at higher risk

  • You do not have a family history of any of the following:

    • Polycystic Kidney Disease

    • Marfan Syndrome

    • Ehlers-Danlos Syndrome

    • Fibromuscular dysplasia

    • Loeys-Dietz syndrome


If you have any questions about your eligibility or about the project, please contact Olivia on sharpeo1@cardiff.ac.uk for further information.




Who is running this research project?

This research project is being led by Olivia Sharp, 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 Olivia to request a recruitment pack. Please email: sharpeo1@cardiff.ac.uk 


Find out more about other ways to get involved.





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Hereditary Brain Aneurysm Support (HBA Support) is a charity registered in England and Wales. Registered Charity Number 1210213

 

Hereditary Brain Aneurysm Support provides information and support for individuals and families affected by brain aneurysms with a proven or suspected hereditary link. We also aim to raise awareness and help people understand brain aneurysms better.

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