Longitudinal Ulnar Deficit (ULNEER)
This study focuses on a rare hand condition called ulnar longitudinal deficiency, or ulnar hand deformity, which affects how a child's hand and forearm develop. Because it's uncommon and can vary a lot, doctors don't always agree on the best way to treat it, especially when surgery is needed. This research aims to improve our understanding and treatment of this condition by looking at information already collected in patients' medical records from CEREFAM and/or Trousseau Hospital. This includes past doctor's notes, scans, and therapy assessments. The study won't involve new tests or appointments for your child. Parents will also be asked to complete questionnaires about their child's quality of life and how independent they are. The findings will help create better guidelines for assessing and treating this condition in the future.
At a glance
What is this study about?
This research is all about a rare hand condition known as ulnar longitudinal deficiency, or ulnar hand deformity. This means that a child's forearm and hand haven't developed typically, affecting their normal movement and use. Because this condition is quite rare and can affect children in many different ways, doctors sometimes find it hard to decide on the best treatment plan. There's currently no clear agreement on when surgery is most helpful.
The main goal of this study is to gather information from existing medical records to get a clearer picture of how this condition affects children over time. Researchers will look at past details from hospital visits, scans, and any occupational therapy your child might have had. This will help them understand how the children's hand function develops and what factors doctors consider when deciding whether surgery is the right step to take.
Your child won't need to have any new medical tests or therapy appointments specifically for this study. The researchers are simply reviewing information that has already been collected as part of your child's regular care. Parents will also be asked to fill out some simple questionnaires about their child's daily life, independence, and overall well-being. The results of this study will help healthcare professionals create better guidelines for future care, making sure children with this condition receive the most consistent and helpful support possible.
Key takeaways
- Studies rare hand condition in children (ulnar longitudinal deficiency).
- Uses existing medical records, no new tests for your child.
- Parents provide input via questionnaires on quality of life.
- Aims to improve understanding and treatment guidelines.
- For children aged 3-18 treated at CEREFAM or Trousseau Hospital.
Who may be eligible?
This study is looking for children aged between 3 and 18 years old. To be included, your child must have been diagnosed with an ulnar hand deformity, whether it affects one hand or both. It doesn't matter if they've had surgery for it or not.
Your child must also have received care and follow-up at either CEREFAM or Trousseau Hospital (or both). It's important that their medical records are complete and contain all the information needed, like previous assessments and notes from their doctors.
Unfortunately, if you or your child don't speak French, or if there isn't enough information in their medical records from before or after any surgery, your child won't be able to take part in this particular study.
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 18 years old?
- Does your child have ulnar hand deformity (on one or both hands)?
- Has your child been seen at CEREFAM or Trousseau Hospital?
- Are your child's medical records from these hospitals complete?
- Are you able to complete questionnaires in French?
What does participation involve?
If your child is eligible for this study, your involvement would be quite light. The main part of the study involves researchers looking at information already in your child's existing medical records from their past care at CEREFAM and/or Trousseau Hospital. This means your child won't need to attend any extra appointments, have new tests, or receive different medications specifically for this research.
Your main contribution as a parent would be completing two questionnaires. These questionnaires ask for your views on your child's quality of life and their independence in daily activities. They are designed to be straightforward and will help the researchers understand the real-world impact of the condition from a parent's perspective. There are no follow-up visits or ongoing commitments required once the questionnaires are completed.
Potential risks and benefits
Locations (1)
- Hôpitaux Paris Est Val-de-Marne - Centre de Référence des Malformations des MembresVerified postcodeSaint-Maurice, France
Common questions
What is ulnar longitudinal deficiency?
It's a rare condition where a child's forearm and hand haven't developed fully or typically.
Will my child need any new tests?
No, your child will not have any new tests, appointments, or medical procedures for this study.
What will parents have to do?
Parents will be asked to fill out two questionnaires about their child's quality of life and independence.
Why is this study important?
It aims to help doctors better understand the condition and improve how it's treated in the future, especially regarding surgery.
Will my child's name be used?
No, all information collected will be kept private and anonymous to protect your child's identity.
How to find out more
Auriane AS SLAMA
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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