Severe Congenital Hemostatic Defects, Cerebral MIcrobleeds and COGnition
This study explores 'cerebral microbleeds' (CMBs) – tiny bleeds in the brain – in adults with severe congenital bleeding disorders such as haemophilia or von Willebrand disease. We know these tiny bleeds are common in some older people and can be linked to problems with memory and thinking. We also know that people with severe bleeding disorders have a higher risk of larger brain bleeds. This research aims to understand if having a severe bleeding disorder increases the chances of having these tiny bleeds, and if these bleeds affect how well people think and remember things. Participants will have a special brain scan and complete some memory and thinking tests.
At a glance
What is this study about?
Imagine tiny, tiny leaks in the smallest blood vessels of your brain. These leaks leave behind tiny specks of a substance called hemosiderin, which is essentially residue from leaky red blood cells. We can see these specks using a special type of brain scan. These are called 'cerebral microbleeds' (CMBs). They are quite common, especially in older people, and can sometimes be linked to problems with memory and thinking, or even a higher risk of more serious strokes. However, we don't fully understand why they happen in everyone.
This study is particularly interested in people who have severe congenital bleeding disorders, such as haemophilia or von Willebrand disease. In these conditions, the blood doesn't clot properly. We know that people with these disorders are at a higher risk of bleeding, including bleeding in the brain. What we don't know is if their bleeding disorder makes them more likely to have these tiny microbleeds, and if these microbleeds then affect how well their brain works, particularly their memory and thinking skills.
By carefully looking at these tiny bleeds in people with severe bleeding disorders, we hope to gain a much better understanding of how these bleeds develop and what role a person's ability to clot their blood plays. This could help us understand the connection between severe bleeding disorders, brain health, and thinking abilities, potentially leading to better ways to monitor and care for people in the future.
Key takeaways
- This study investigates tiny brain bleeds in people with severe bleeding disorders.
- It uses special brain scans and memory tests to understand connections.
- Focuses on adults with severe haemophilia A/B or von Willebrand disease.
- Aims to understand if bleeding disorders increase microbleeds and affect thinking.
- Participation involves a single visit for non-invasive tests.
Who may be eligible?
To be considered for this study, you need to be an adult (18 years or older, with no upper age limit) and have a severe congenital (meaning you were born with it) bleeding disorder.
Specifically, this means you must have severe or moderate haemophilia A or B, where your clotting factor VIII (or IX) levels are very low (less than 5%). Alternatively, you could have severe von Willebrand disease, where your von Willebrand Factor activity is also very low (less than 15%).
You would not be able to join if you have other known bleeding disorders in addition to your haemophilia or von Willebrand disease, or if you have HIV. Also, if a specific brain scan isn't safe for you (for example, if you have certain metal implants), you wouldn't be able to participate. Of course, you would also need to be able to understand and agree to take part.
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 18 years old or older?
- Do you have severe or moderate haemophilia A or B?
- OR do you have severe von Willebrand disease?
- Are you able to safely have a brain MRI scan (no incompatible metal implants)?
- Do you not have HIV or any other known bleeding disorder in addition to your main one?
What does participation involve?
If you decide to take part, you will have a specific type of brain scan called a 3-Tesla MRI. This scan uses strong magnets and radio waves to create detailed pictures of your brain and can show these tiny microbleeds. You will also complete a series of tests designed to check your memory, concentration, and other thinking skills. These assessments help us understand if there's any impact on your cognitive function. The study involves a single visit for these assessments and scans. The total duration of your active participation will likely be within one day.
Potential risks and benefits
Locations (1)
- chu de LilleVerified postcodeLille, France· Recruiting
Common questions
What are 'cerebral microbleeds'?
They're tiny, tiny spots in your brain where a very small amount of blood has leaked from a blood vessel. They're too small to cause a stroke but can be seen on special brain scans.
Why are you studying this in people with haemophilia?
People with conditions like haemophilia are more prone to bleeding. We want to see if this makes them more likely to have these tiny brain bleeds and if those bleeds affect their memory or thinking.
What does a 3-Tesla MRI involve?
It's a detailed brain scan where you lie still inside a large machine that uses strong magnets. It's safe but can be a bit noisy and some people find it a little enclosed.
Will taking part help my condition directly?
While this study won't directly change your treatment, the findings could help doctors understand and care for people with bleeding disorders better in the future.
Do I have to do any follow-up visits?
No, this study is designed as a single visit to complete the brain scan and thinking tests.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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