RecruitingObservational

Acceptability testing of a Decision Support Tool for patients and relatives that are deciding about being screened for Thoracic Aortic Disease

This study is about a heart condition called Thoracic Aortic Disease (TAD). It's often hidden until it becomes very serious. TAD can run in families, and finding it early through scans and genetic tests could save lives. However, many people don't know much about TAD, and it can be hard to get tested. We're creating an online tool to give families clear information and help them decide about getting screened for TAD. We’re asking people who have TAD, their close family members, and healthcare staff to look at this new tool and tell us what they think. Their feedback will help us make sure the tool works well and can be used to help more people in the future.

At a glance

Status

Recruiting

Sponsor

University of Leicester

Enrolment target

Start

12 Sep 2025

Estimated completion

31 Aug 2026

Thoracic aortic disease

What is this study about?

Thoracic Aortic Disease (TAD) is a problem with the body's main blood vessel, the aorta, near your chest. It often doesn't cause any symptoms until it becomes very dangerous, sometimes suddenly. The biggest worry is when the aorta tears, which can be life-threatening. Finding TAD early is really important for preventing these serious problems, and it's a key area of research for the NHS.

Sometimes, TAD can be passed down in families through genes. If family members are checked early with special scans and genetic tests, we might be able to catch the disease before it gets too serious and potentially save lives. However, there are some challenges: people might not know enough about TAD, and some don't have easy access to the right care. Also, there can be concerns about the cost of tests and how they might affect someone's life.

To help with these issues, we're developing an interactive online tool. This tool will give families clear information about TAD and help them understand their choices about getting tested. It's called a Decision Support Tool (DST). We believe this tool will encourage more people to get screened and help medical teams find TAD sooner. This particular part of our research involves asking people with TAD, their close relatives, and healthcare professionals to try out the DST and tell us what they think about it.

Key takeaways

The study focuses on a heart condition called Thoracic Aortic Disease (TAD).
It aims to create an online tool to help families decide on TAD screening.
Your feedback will help improve this tool for future patients.
Participation involves looking at the tool and giving your opinion.
The study hopes to encourage earlier detection of TAD.

Who may be eligible?

You might be able to take part if you are 16 years or older. This study is looking for a few different groups of people.

Firstly, we're interested in people who have been diagnosed with a specific type of Thoracic Aortic Disease (NS-TAD) in the last two years. This includes those who have had treatment for it.

Secondly, we'd like to hear from close family members (like parents, children, or siblings) of someone with TAD. Finally, healthcare professionals who help patients and families make decisions about TAD screening can also join.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 16 years old or older?
Have you been diagnosed with a specific type of TAD (NS-TAD) in the last 2 years?
Are you a close relative (parent, child, or sibling) of someone with TAD?
Are you a healthcare professional involved in discussions about TAD screening?
Do you understand English well enough to participate?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you will be asked to look at the new online tool called the Decision Support Tool. After looking at it, you will give your feedback. This will either be done through a conversation with a researcher or by filling out a questionnaire. The study will run from October 2024 to August 2026.

Potential risks and benefits

There won't be any direct health benefits for you specifically if you take part in this study. However, your involvement will be very valuable in helping us create a better tool for future patients and their families, which could ultimately save lives. Some people might find it helpful to talk about their experiences with TAD during the study. Please be aware that discussing your experiences with TAD might be upsetting for some, but you are free to stop taking part at any time without giving a reason.

Locations (2)

Leicester Royal Infirmary
Approximate
Leicester, England
Queen Elizabeth Hospital
Approximate
Birmingham, England

Common questions

What is Thoracic Aortic Disease (TAD)?

TAD is a condition where the main blood vessel in your body, the aorta near your chest, has a bulge or swelling. It can be serious if not found early.

Why is this study important?

This study aims to develop a tool to help families understand TAD and make informed decisions about getting tested, which could help find the disease earlier and potentially save lives.

What is a Decision Support Tool?

It's an online tool designed to provide clear information and help people make choices about their health, in this case, about screening for TAD.

Will taking part help my health directly?

No, there are no direct health benefits for you. However, your feedback will help us create a better tool for others in the future.

Who is paying for this research?

The study is funded by the National Institute for Health and Care Research (NIHR), a major research funder in the UK.

How to find out more

Jane Hughes

jane.hughes2@sheffield.ac.uk +44 (0)7756959752 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.