Participating in genetic studies
Our studies have been approved by the Ethics Committee of the medical faculty of UCL (Commission d'Ethique Biomédicale Hospitalo-Facultaire, ref: 2009/20FEV/073)
If you (and one or more of your family members) have a vascular, or skeletal anomaly and would like to participate in our studies, or if you are a clinician taking care of such a family/families, please contact us.
If you decide to participate in a research project you will be asked to sign a consent form indicating that you agree to be involved.
The informed consent is an information sheet explaining the following:
* What the research is
* Why it is needed
* What will be expected of you if you participate
* The potential risks and benefits to you
* How your identity will be protected
* How information about you will be kept anonymous
* Who will have access to the information collected
You can ask additional questions and discuss the consent form with your family/friends/physician before deciding whether to participate.
Information used for research is usually anonymised so that no one can identify the individual from the information.
See also the web-sites : Orphanet and GeneTests
