RecruitingOBSERVATIONAL

Case Notes Review on Patients With Hereditary Haemorrhagic Telangiectasia

This study focuses on people with a condition called Hereditary Haemorrhagic Telangiectasia, often shortened to HHT. It's a condition that can cause problems with blood vessels. Researchers at Hammersmith Hospital in London are reviewing existing health records of patients they have treated over many years. This isn't a new treatment or experiment; it's about looking back at information already collected during regular patient care. They want to see if they can find patterns. For example, they're trying to figure out if certain characteristics of people with HHT mean they are more likely to have complications like strokes, brain infections, issues during pregnancy, or high blood pressure in the lungs. This review helps them learn more about HHT and potentially improve care in the future.

At a glance

Status

Recruiting

Sponsor

Imperial College London

Enrolment target

2,000

Start

01 Jan 2000

Estimated completion

01 Jan 2028

Telangiectasia, Hereditary Hemorrhagic

What is this study about?

This study is about a health condition called Hereditary Haemorrhagic Telangiectasia, or HHT for short. It's a condition that affects blood vessels throughout the body.

The team at Hammersmith Hospital in London has a special clinic for people with HHT and a related problem called pulmonary arteriovenous malformations (which are unusual connections between blood vessels in the lungs). They've been gathering information about their patients as part of their routine care since 1985. This study isn't about giving you new medicines or treatments; instead, it's about looking back at all that existing information.

The main goal is to understand if certain types of people with HHT are more likely to develop specific health problems. For example, they want to see if some patients are more at risk of having strokes, brain infections, complications during pregnancy, or high blood pressure in the lungs. By looking through these past records, researchers hope to identify clues that could help them predict who might be more susceptible to these issues. This knowledge can then be used to potentially offer better and more personalised care to people with HHT in the future.

Key takeaways

This study reviews existing medical records, not new treatments.
It aims to understand HHT complications better.
Data comes from HHT patients treated at Hammersmith Hospital.
No active participation is required from patients.
The goal is to improve future HHT patient care.

Who may be eligible?

This study is reviewing information from people who have already been treated at Hammersmith Hospital in London. It includes individuals with Hereditary Haemorrhagic Telangiectasia (HHT).

If you have HHT and have received care at Hammersmith Hospital, your records might be included in this review.

There are no specific reasons why someone would be excluded from having their records included, as long as they were a patient at Hammersmith Hospital with HHT.

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.

Have you been diagnosed with Hereditary Haemorrhagic Telangiectasia (HHT)?
Have you received care for your HHT at Hammersmith Hospital in London?
Were your medical records created as part of your standard care at the hospital?
Do you understand that this study is looking at past information, not new treatments?

Answer every question to see your result.

What does participation involve?

You won't need to do anything new for this study, as it involves reviewing information that has already been collected during your past visits and care at Hammersmith Hospital. You won't have any extra appointments, tests, or medication as part of this research. Your doctor will simply be looking at your existing medical notes.

Potential risks and benefits

There are no direct risks to you from this study, as no new tests or treatments are involved. The study is simply looking at your existing medical historical information. The potential benefit is that by understanding more about HHT, doctors may be able to better predict and manage complications for future patients. You have the right to ask if your records are part of this study and, if so, to discuss any concerns with your healthcare team.

Locations (1)

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

Respiratory Medicine, Hammersmith Hospital
Verified postcode
London, United Kingdom· Recruiting

Common questions

What is Hereditary Haemorrhagic Telangiectasia (HHT)?

HHT is a genetic condition that affects blood vessels, which can cause them to be fragile and bleed easily, or to form in unusual ways.

Do I need to do anything if I'm included in this study?

No, you don't need to do anything. This study is reviewing existing patient records, not asking you to take part in new activities.

Will my personal details be kept private?

Yes, all studies involving patient information are required to protect your privacy and use anonymous data where possible.

Who is conducting this study?

The study is being conducted by researchers at Hammersmith Hospital in London.

Why is this research important?

It's important because it helps doctors learn more about HHT and its complications, which could lead to better care for patients in the future.

How to find out more

Claire L Shovlin

c.shovlin@imperial.ac.uk 0208 383 1000 Official trial record

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