European Newborn Study: Early Markers for a Better LifE
This study, called the European Newborn Study, wants to help doctors better understand and predict how babies with brain injuries develop. The main goal is to create a computer program that can spot potential developmental issues early, particularly for conditions like cerebral palsy. This will help doctors provide the best possible care to these babies right from the start. The study also focuses on the experiences of parents and carers during the first two years of their baby's life, especially if their baby is at risk of cerebral palsy. By understanding their journey, the study hopes to create recommendations that offer better support to families during this challenging time. Participating children won't need extra tests; only information from tests already part of their routine care will be used.
At a glance
What is this study about?
The European Newborn Study, also known as 'Early Markers for a Better LifE', is an important research project looking into how doctors can better support babies who have had a brain injury. We want to understand more about these babies' development, especially those at risk of developing cerebral palsy – a condition that affects movement and coordination. By learning more, we hope to improve the care and support available for them and their families in the future.
One of the main goals is to create a clever computer model. This model will use information from many babies to help doctors predict any problems that might come up as a baby grows after a brain injury. Imagine having a tool that could give doctors an early heads-up; this would mean they could step in sooner and offer the right help at the right time, making a big difference for the baby and their family.
The study also cares deeply about the parents and carers. We want to understand what it's like for families during the first two years after their baby, who is at risk of cerebral palsy, is born. By listening to their experiences, we can learn what kind of support is most helpful. This valuable feedback will then be used to create better guidance and support systems for other parents facing similar situations.
Key takeaways
- A research study to help predict developmental problems in babies with brain injuries.
- Aims to improve future care for babies at risk of cerebral palsy.
- Will collect information from routine medical tests, no new tests for your child.
- Parents will complete two online questionnaires over two years to share experiences.
- Your participation helps create better support for other families in the future.
Who may be eligible?
This study is looking for babies who have been diagnosed with a brain injury based on an MRI scan and are considered at high risk of developing cerebral palsy. This includes babies with certain types of brain injuries affecting different parts of the brain.
We cannot include babies who have other serious health problems that are known or suspected, such as major birth defects, genetic conditions, metabolic disorders, or infections in the brain or spinal cord. Also, parents need to be at least 18 years old and able to read and understand information in one of these languages: Dutch, English, French, German, Italian, or Spanish.
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.
- Has my baby been diagnosed with a brain injury on an MRI scan?
- Does my baby have one of the specific types of brain injury mentioned?
- Does my baby NOT have a serious congenital, genetic, metabolic, or central nervous system infection problem?
- Am I (the parent) at least 18 years old?
- Can I read one of these languages: Dutch, English, French, German, Italian, or Spanish?
What does participation involve?
If your child is eligible and you decide to take part, your involvement will be quite straightforward. We will ask you to fill in two questionnaires online. The first one will be when your child is about 3-4 months old (corrected for prematurity, if applicable), and the second when they are 2 years old (again, corrected age).
Your child won't need any extra medical tests specifically for this study. We will only use information from the routine medical tests and checks that your child would already be having as part of their standard care. This information will then be safely stored in the study's database. The entire study involves these two questionnaires spread over two years.
Potential risks and benefits
Locations (8)
- Assistance Publique Hôpitaux de ParisVerified postcodeParis, France· Recruiting
- University Hospital EssenVerified postcodeEssen, Germany· Recruiting
- Ospedale Pediatrico Meyer FirenzeVerified postcodeFlorence, Italy· Recruiting
- Istituto Giannina GasliniVerified postcodeGenova, Italy· Not yet recruiting
- Ospedale Maggiore di MilanoVerified postcodeMilan, Italy· Recruiting
- Fondazione Stella MarisVerified postcodePisa, Italy· Recruiting
- UMC UtrechtVerified postcodeUtrecht, Netherlands· Recruiting
- University Hospital La PazVerified postcodeMadrid, Spain· Recruiting
Common questions
What is cerebral palsy?
Cerebral palsy is a group of conditions that affect movement and muscle tone. It's caused by damage to the brain that occurs before or during birth, or in early childhood.
Will my child need extra hospital visits?
No, your child will not need any extra hospital visits or tests specifically for this study. We only use information from their routine hospital care.
What does 'corrected age' mean?
Corrected age is used for babies who were born prematurely. It's their actual age minus the weeks or months they were born early. This helps to account for their developmental stage.
How long will my family be involved in the study?
Your family will be involved for about two years, as we ask you to complete two online questionnaires – one when your child is roughly 3-4 months old and another when they are 2 years old.
Who will see our personal information?
All your information will be kept strictly confidential. Researchers involved in the study will have access, but it will be safely stored and used only for research purposes to understand overall trends, not individual cases.
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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