RecruitingOBSERVATIONAL

IMarkHD: in Vivo Longitudinal Imaging of HD Pathology

The IMarkHD study is looking closely at how Huntington's disease (HD) affects the brain. Using advanced imaging techniques called PET and MRI scans, researchers want to see how the brain changes in people with HD, from before symptoms even start to later stages of the disease. They’ll also compare these changes to people who don't have HD. The goal is to understand the disease progression better, which could help develop new ways to identify HD earlier and create more effective treatments. The study will follow participants over three years, checking for molecular, functional, and structural changes in the brain that might lead to HD symptoms.

At a glance

Status

Recruiting

Sponsor

King's College London

Enrolment target

113

Start

20 Jul 2021

Estimated completion

30 Jun 2027

Huntington Disease

What is this study about?

Huntington's disease (HD) is a condition that affects the brain and can lead to problems with movement, thinking, and behaviour. Doctors know that many things happen in the brain as HD develops, and this study called IMarkHD aims to get a complete picture of these changes. Instead of looking at just one part, the researchers will use two powerful brain scanning methods: PET scans and MRI scans. These scans will help them examine the brain's molecular makeup, how it functions, and its physical structure.

The main idea is to watch how these aspects of the brain change over three years. Participants will have scans and checks at the start, after one year, and after two years. The study includes people with HD at different stages – from those who don't have symptoms yet to those with more advanced disease – and healthy volunteers without HD. By comparing these groups, and by following people over time, the researchers hope to identify specific brain changes that are linked to the development and progression of HD symptoms. This could lead to a better understanding of what causes HD symptoms, potentially paving the way for new and improved treatments.

Ultimately, the findings from this study could be very important. If researchers can pinpoint specific changes that happen in the brain before symptoms appear, or that get worse as the disease progresses, these could become 'markers' for HD. These markers could then be used in future clinical trials to test if new drugs are working. The long-term goal is to help scientists develop completely new therapies that can slow down, stop, or even prevent the progression of Huntington's disease.

Key takeaways

This study uses special brain scans to learn about Huntington's disease.
It aims to understand how HD changes the brain over three years.
The study includes people with HD and healthy volunteers.
Findings could lead to better diagnosis and new treatments for HD.
No new medications are involved, only assessments and scans.
Participants will attend at least 10 visits over three years in London.

Who may be eligible?

This study is looking for both adults with Huntington's disease and healthy volunteers who don't have the disease. Participants must be between 21 and 75 years old.

For everyone, it's important to have good eyesight and hearing so you can take part in some of the study tasks. You must be able to understand the study and agree to take part. For some participants, if you can become pregnant, you'll need to agree to use effective contraception during the study. You also need to be generally in good health and able to travel to the study centres in London for your appointments.

For those with Huntington's disease, the study is interested in people at different stages – from those who carry the gene but don't have symptoms yet, to those in earlier or later stages of the disease. Healthy volunteers will be matched to participants with HD by age and sex, and should not have a family history of HD.

Quick self-check

Are you between 21 and 75 years old?
Can you travel to London for study visits?
Are your eyesight and hearing generally good?
If you could become pregnant, are you willing to use effective contraception?
Do you have Huntington's disease (or no HD, if applying as a healthy volunteer with no family history of HD)?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you take part in this study, you will be followed for three years. This means you’ll have appointments at the start (known as 'Baseline'), after one year, and after two years. There will be at least 10 visits in total for most participants over this three-year period. These visits will involve special brain scans: PET scans and MRI scans. You will also have clinical assessments and other tests. The study is designed to observe changes over time, so attending all visits is important. There are no medications involved in this study; it focuses on imaging and assessments.

Potential risks and benefits

Participating in this study offers the benefit of contributing to our understanding of Huntington's disease, which could lead to new ways to diagnose and treat the condition for future patients. For yourself, there might not be any direct medical benefit. As with any medical study, there are some potential risks. These include the very small exposure to radiation from PET scans (similar to natural background radiation) and any discomfort from lying still during the scans. The study team will explain all potential risks in detail, and you will have the right to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (1)

King's College London
London, United Kingdom· Recruiting

Common questions

What are PET and MRI scans?

PET and MRI are types of sophisticated medical scans that allow doctors to see inside the brain without surgery. They provide detailed pictures and information about how the brain is structured and how it works.

Why is this study important?

This study is important because it aims to understand how Huntington's disease changes the brain over time, from early stages to more advanced ones. This knowledge could help develop better diagnostic tools and new treatments.

Will I receive any personal results from my scans?

The study focuses on research, and the scans are for collecting group data. You won't typically receive individual test results, but if anything unexpected is found that needs medical attention, you would be informed.

Do I have to take any new medication for this study?

No, this study does not involve taking any new medications. It focuses on using brain scans and other assessments to observe and understand the disease.

How long will I be in the study?

You will be involved in the study for a total of three years. This includes visits at the beginning, after one year, and after two years, with at least 10 visits in total.

How to find out more

Steve Williams, PhD

steve.williams@kcl.ac.uk 0044-(0)-203-228-3063 Official trial record

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