Active not recruitingOBSERVATIONAL

CHORUS - Comprehensive HHT Outcomes Registry of the United States (Formerly OUR HHT Registry)

The CHORUS study wants to learn more about a condition called Hereditary Hemorrhagic Telangiectasia, often shortened to HHT. HHT can cause problems with blood vessels in different parts of the body. This study wants to understand everything about HHT: how it affects people, the different symptoms they get, and how their health changes over many years. Researchers are enrolling 1,000 patients from special HHT centres in North America. They will gather health information and saliva samples. By collecting this information over time, scientists hope to find better ways to treat HHT and improve the lives of those living with the condition.

At a glance

Status

Active not recruiting

Sponsor

Unity Health Toronto

Enrolment target

296

Start

01 Nov 2018

Estimated completion

30 Jun 2028

Hereditary Hemorrhagic Telangiectasia HHT Arteriovenous Malformation of Brain

What is this study about?

This study, called CHORUS, is designed to help us understand a condition called Hereditary Hemorrhagic Telangiectasia, or HHT. HHT is a health problem that affects blood vessels throughout the body, including in organs like the brain, lungs, and liver, as well as on the skin and in the nose and mouth. These affected blood vessels can cause different symptoms, such as bleeding problems.

The main goal of CHORUS is to take a closer look at how HHT affects people's health over time. Researchers want to collect information from a large group of 1,000 patients from special HHT clinics in North America. By continuously gathering details about their symptoms, treatments, and general well-being, the study hopes to create a clearer picture of how HHT progresses and what factors might influence it.

Ultimately, the knowledge gained from this study is really important for developing new and more effective treatments for HHT. There are new medicines being developed, and having a good understanding of how HHT changes naturally will help us figure out which treatments work best for different people. It's about empowering patients and doctors with better information to improve care for everyone with HHT.

Key takeaways

Help scientists better understand HHT.
Contribute to finding improved treatments for HHT.
Involves sharing your health information and a saliva sample.
No new medications or specific treatments are given as part of the study.
Participation is long-term to track changes over time.

Who may be eligible?

To be part of this study, you need to have a confirmed diagnosis of HHT. This means your doctor has diagnosed you using specific criteria, or you have a genetic test confirming HHT. You also need to be aged 18 or older.

It's important that you are able to understand what the study involves and agree to take part freely. This is called giving 'informed consent'. If for any reason you can’t give consent yourself, someone legally allowed to make decisions for you might be able to do so on your behalf.

Anyone who cannot give informed consent, either themselves or through a chosen representative, would not be able to join this 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.

I have been diagnosed with HHT by a doctor or genetic test.
I am 18 years old or older.
I can understand information about the study and agree to take part, or someone can do this for me.
I live in a region where one of the participating HHT centres is enrolling patients (currently North America).

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you will become part of a special registry. This means researchers will regularly collect information about your HHT, your symptoms, and how your condition affects you over a long period. You will also be asked to provide a saliva sample for further research.

This is a long-term study that tracks your health over time, so it doesn't have a set end date for your involvement, but rather continues to gather information to understand the long-term effects of HHT. There are no specific visits or new medications involved directly with the study; rather, it collects information from your existing medical care.

Potential risks and benefits

The main benefit of taking part is contributing to a better understanding of HHT, which could lead to improved treatments for future patients, and potentially for you too. There are very few risks involved, as the study mainly collects information from your existing medical records and a saliva sample, which is a simple and safe procedure. You are free to withdraw from the study at any time without giving a reason, and this will not affect your usual medical care.

Locations (1)

St. Michael's Hospital
Verified postcode
Toronto, Canada

Common questions

What is HHT?

HHT, or Hereditary Hemorrhagic Telangiectasia, is a genetic condition that causes some blood vessels to develop abnormally. This can lead to various symptoms, including bleeding, but the condition affects everyone differently.

What is a 'registry' in a study?

A registry is like a secure database where researchers collect and store health information from many people with the same condition. It helps them study the condition over time and understand how it affects different individuals.

Will I have to take new medicine?

No, this study does not involve taking any new medications. Its purpose is to gather information about HHT and how it's treated in real-world settings.

How long will I be in the study?

This study is designed to collect long-term information, so your involvement will continue for an extended period to help researchers understand how HHT changes over many years.

Will my personal details be kept private?

Yes, all your personal information is kept confidential. The data collected will be used for research purposes only and your identity will be protected.