Not yet recruitingOBSERVATIONAL

Link Between Abnormal Bleeding and Coagulation Disorders in Noonan Syndromes

Noonan syndrome is a genetic condition that often causes people to bleed more easily, for example, from their nose or mouth. It can be hard for doctors to predict who is most at risk of serious bleeding, especially before operations, as current tests aren't always accurate. This study will look at information from many patients with Noonan syndrome across France. Doctors have already recorded their bleeding history using a standard questionnaire and performed routine blood tests. By comparing these, researchers hope to find out if these tests are good at predicting bleeding risk. The goal is to help doctors plan medical procedures more safely and reduce bleeding-related problems for patients with Noonan syndrome.

At a glance

Status

Not yet recruiting

Sponsor

University Hospital, Bordeaux

Enrolment target

100

Start

01 Jan 2026

Estimated completion

01 Jan 2027

Noonan Syndrome

What is this study about?

Noonan syndrome is a condition that someone is born with, affecting about 1 in every 1,000 to 2,500 children. One common issue for people with Noonan syndrome is that they tend to bleed more easily, often from places like their skin, mouth, or nose. About half of all people with Noonan syndrome experience some kind of bleeding difficulty. These bleeding issues can be caused by different things, sometimes related to cells in the blood called platelets, and sometimes due to more complex problems with how blood clots.

Currently, it's quite difficult for doctors to know for sure which patients are most likely to have severe bleeding, for example, if they need an operation. Because of this, there aren't clear guidelines on how to prevent bleeding risks before medical procedures. Doctors usually recommend that people with Noonan syndrome see a specialist to assess their bleeding risk, but the tests often used aren't always accurate in predicting serious bleeding.

This study aims to change that. Researchers will look at existing medical information from a large number of patients with Noonan syndrome who have been seen in different hospitals in France. These patients have already had their bleeding tendencies assessed by a doctor using a standard questionnaire, and they've also had routine blood tests. By comparing this bleeding information with the results of their blood tests, the study hopes to find out if these tests can actually help predict a person's risk of bleeding. Ultimately, this research could help doctors better prepare for operations and other medical treatments for people with Noonan syndrome, making these procedures safer and reducing bleeding complications.

Key takeaways

Noonan syndrome often causes bleeding issues.
Current tests don't always predict severe bleeding reliably.
This study uses existing medical records, no new tests.
Goal is to find better ways to predict bleeding risk.
Could make future surgeries and medical treatments safer.
Your data helps improve care for others with Noonan syndrome.

Who may be eligible?

To be included in this study, you must have Noonan syndrome. This study is open to people of all ages.

It's important that you, or your parents or guardians if you are a child, have been told about the study. Also, you or your legal representative must not object to your existing medical information being used for this research.

If you are an adult under legal protection (like someone with guardianship), you cannot be included. Everyone involved in the study also needs to be part of, or benefit from, a social security scheme, which is standard for medical studies in France.

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.

Do I have Noonan syndrome?
Am I, or my child, of any age?
Have I, or my parents/guardians, been told about this study?
Do I, or my legal representative, agree to my existing anonymous medical data being used?
Am I not an adult under legal protection (e.g., guardianship)?
Am I, or does my child, benefit from a social security scheme?

Answer every question to see your result.

What does participation involve?

Taking part in this study won't involve any new appointments, tests, or treatments for you. The researchers will simply be looking at your existing medical information that has already been collected as part of your routine care. This includes records from a doctor's visit where your bleeding tendencies were assessed using a standard questionnaire, and results from blood tests you've already had. There will be no extra visits, medication, or follow-up required from you. The study will just use information from your past medical records.

Potential risks and benefits

There are no direct medical risks to you from participating in this study, as it only involves reviewing your existing anonymized medical records. You will not undergo any new procedures or treatments. The potential benefit is that the study could lead to a better understanding of how to predict bleeding risks in people with Noonan syndrome, which may help improve future medical care for patients like you. You have the right to withdraw your consent for your data to be used at any time without affecting your medical care.

Locations (1)

CHU de Bordeaux, Service Hématologie Biologique
Verified postcode
Bordeaux, France

Common questions

What is Noonan syndrome?

Noonan syndrome is a condition someone is born with that can affect different parts of the body, often causing people to bleed more easily.

Why is this study important?

It could help doctors better understand who is at risk of bleeding problems, making medical procedures safer for people with Noonan syndrome.

Will I have to do anything new for this study?

No, you don't need to do anything new. The study uses information already collected from your past medical appointments.

What kind of information will they look at?

They will look at records of your bleeding history from a questionnaire and results from blood tests you've already had.

Is my personal information safe?

Yes, your information will be handled carefully and kept private, usually without your name attached, to protect your identity.

How to find out more

Mathieu FIORE

mathieu.fiore@chu-bordeaux.fr 05 57 65 64 78 Official trial record

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