Characterization and Support for Neurodevelopmental Disorders Associated With Congenital Heart Defects
This study explores how heart problems present at birth, known as congenital heart defects (CHD), can impact a child's development. Many children with severe CHD may experience developmental differences, affecting things like learning, language, and movement, even if their heart condition is treated. The project aims to spot these developmental delays early, ideally by age 3. Researchers also want to find out why some children with CHD develop these differences and others don't, looking for clues that might help identify children at risk sooner. This could lead to better support and improved quality of life for these children.
At a glance
What is this study about?
Heart problems that babies are born with, known as congenital heart defects (CHD), are quite common. While doctors can often fix these heart problems, we've learned that having CHD can sometimes affect a child's development in other ways. These are called neurodevelopmental disorders, and they can impact things like how children learn, speak, move, or interact with others. This can be a challenge for families and affect a child's quality of life.
Even children who have had successful heart operations for simple heart problems can sometimes be affected. We don't fully understand why these developmental differences happen in children with CHD. It seems there might be a link between how the heart forms and how the brain develops. This study is important because it's trying to find out more about this connection.
The main goals of this research, called the CATAMARAN - Pediatrics project, are twofold. Firstly, they want to find ways to spot any potential developmental delays in children with CHD as early as age 3. This means they'll be looking carefully at how children are growing and learning. Secondly, they want to understand what makes some children with CHD more likely to develop these differences than others. By identifying these factors, doctors could step in earlier with the right support, which could make a big difference to a child's life.
Key takeaways
- This study explores how heart conditions at birth can affect a child's development.
- It aims to identify developmental differences early in children with heart defects.
- Researchers want to understand why some children are more affected than others.
- Participation involves developmental checks and blood tests.
- The goal is to improve future support for children with congenital heart defects.
Who may be eligible?
This study is looking for children between 3 and 11 years old. To take part, your child must have been born with a serious heart problem that needed surgery in the first three months of their life.
Both you (as parents) and your child must be able to understand and speak French well. You'll also need to be part of a social security scheme or similar system. All parents must agree to the study in writing, and if your child is 6 or older, they also need to agree.
Your child cannot join if they have a known genetic condition or other syndrome that affects their development, or if it's not possible to properly check their development.
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.
- Is your child between 3 and 11 years old?
- Did your child have a serious heart defect surgery within their first three months of life?
- Do both you and your child understand and speak French?
- Are you both covered by a social security system?
- Does your child NOT have a known genetic condition that affects development?
What does participation involve?
If you decide to take part, your child will have some blood samples taken. They will also undergo special tests designed to check their development, looking at areas like learning, language, and movement. These assessments help the researchers understand how your child is developing. The study focuses on understanding development and does not involve new medications. The total duration of your child's participation will depend on the assessment schedule.
Potential risks and benefits
Locations (5)
- Chu BrestVerified postcodeBrest, France· Recruiting
- CHU RennesVerified postcodeRennes, France· Recruiting
- CHU NantesVerified postcodeNantes, France· Recruiting
- CHU AngersVerified postcodeAngers, France· Recruiting
- CHU ToursVerified postcodeTours, France· Recruiting
Common questions
What is a congenital heart defect?
It's a problem with the structure of the heart that is present at birth.
What does 'neurodevelopmental disorder' mean?
It means differences in how a child’s brain develops, which can affect things like learning, speech, or movement.
Will my child get special treatment in this study?
This study is for research and observation. It aims to understand more about existing conditions, not to provide new treatments.
What if my child can't speak French?
The study requires both parents and the child to understand and speak French for participation.
How long will my child need to be involved?
The study involves assessments and blood sampling. The exact duration will be explained by the study team.
How to find out more
Alban Baruteau
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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