Active not recruitingOBSERVATIONAL

Proximal Aortopathy in Scotland - Epidemiology and Surgical Outcomes

This study aims to understand certain heart conditions affecting the main blood vessel from your heart, called the aorta. These conditions, like aortic aneurysm or dissection, can weaken the aorta. Researchers in Scotland are looking at two main things: firstly, how people who have had surgery on this part of the aorta are doing over the long term. This will help them learn which surgical methods work best. Secondly, they want to understand how many people in Scotland have these conditions and where they live. By gathering this information, the study hopes to improve how these conditions are diagnosed, treated, and managed across Scotland, making sure everyone gets the best possible care.

At a glance

Status

Active not recruiting

Sponsor

Golden Jubilee National Hospital

Enrolment target

1,662

Start

18 Dec 2023

Estimated completion

01 Aug 2025

Aortic Diseases Aortic Dissection Aortic Aneurysm, Thoracic Aortic Ectasia Aortic Valve Insufficiency Bicuspid Aortic Valve Marfan Syndrome Ehlers-Danlos Syndrome Loeys-Dietz Syndrome

What is this study about?

This study is all about understanding a group of heart conditions affecting your aorta, which is the body's main artery carrying blood from your heart. Sometimes, due to family history or genetic reasons, the walls of this important blood vessel can become weak and stretch, leading to conditions like aortic aneurysms or dissections. These can be serious, so doctors often recommend surgery to fix the problem when the aorta reaches a certain size.

The researchers in Scotland want to learn more about the different types of surgery currently used for these conditions and see how people are doing years after their operations. This will help them understand which treatments are most effective in the long run. They also want to map out how common these conditions are throughout Scotland and where people with these conditions live. This information is really important because it helps plan healthcare services better, making sure everyone has fair and timely access to the specialised care they need, no matter where they are.

This is the first study of its kind in Scotland to look at surgical results for these specific aortic conditions and to understand how widespread they are in the population. The information gathered will be used to improve current surgical practices and help the National Health Service (NHS) in Scotland make better decisions about how to support people with these conditions in the future, hopefully leading to earlier diagnosis and even better results for patients.

Key takeaways

Researchers are studying heart conditions affecting the aorta in Scotland.
The goal is to improve surgical treatments and patient care for these conditions.
This study uses existing medical records; no new tests or appointments are needed.
It aims to understand how common these conditions are across Scotland.
The findings will help guide future healthcare decisions and improve services.
Personal information will be kept private.

Who may be eligible?

This study is looking at information from two main groups of people. The first group includes adults who have had surgery on the main part of their aorta (the section closest to the heart) in Scotland between 2008 and 2021. This means you would be included if you were over 18 at the time of your surgery and had an operation on this specific part of your aorta. People who only had surgery on a different, lower part of the aorta are not included in this group.

The second group includes adults who have been diagnosed with an aortic condition affecting the main part of their aorta, but haven't had surgery for it. This diagnosis could have been made through scans, genetic tests, or even after death. If you are over 18 and have one of these diagnoses, your information might be part of this group.

It's important to remember that this study is looking back at existing medical information. You wouldn't be asked to do anything new or come for extra appointments. Your past medical records would be reviewed as part of the study.

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 an adult (18 years or older)?
Did you have surgery on the main part of your aorta in Scotland between 2008 and 2021?
Or, have you been diagnosed with an aortic condition affecting the main part of your aorta?
Was your diagnosis made through scans, genetic tests, or a post-mortem examination?

Answer every question to see your result.

What does participation involve?

This study primarily involves collecting and reviewing existing medical records. You would not be asked to attend extra appointments, take any new medications, or undergo additional tests. Researchers will look at information from your medical history, including details about any past surgeries, diagnoses, and how you have been since then. We anticipate your participation would be through the anonymous contribution of your medical information, without you needing to do anything actively.

Potential risks and benefits

The main benefit of this study is that it will help doctors in Scotland understand these heart conditions better and improve care for future patients. By learning which treatments work best and identifying where services are most needed, it could lead to earlier diagnosis and more effective treatments for many people. There are no direct risks to you as a patient, as the study only involves reviewing existing, anonymised medical records, meaning your personal details would not be shared. You always have the right to ask questions about how your data is used and to withdraw your consent if your information is being collected directly from you.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Golden Jubilee National Hospital
Verified postcode
Glasgow, United Kingdom

Common questions

What is the aorta?

The aorta is the body's largest blood vessel, carrying blood from your heart to the rest of your body.

What is an aortic aneurysm or dissection?

These are conditions where the aorta weakens and can bulge (aneurysm) or tear from the inside (dissection), which can be very serious.

Will I have to do anything if my information is used?

No, you don't need to do anything. The study uses existing medical records, so you won't have extra appointments or tests.

How will my personal information be kept private?

The study will protect your privacy by using anonymous data where possible, meaning your name and personal details won't be shared.

Why is this research important for people in Scotland?

It's the first study of its kind in Scotland to understand how common these conditions are and how well treatments work, which will help improve future care across the country.