Invitation to participate in Leiden University Medical Centre study of children and adults with a FOXP1 syndrome
For this study you will be asked to complete an online questionnaire that takes about 3 hours to complete. The data is collected, sent and stored coded (not traceable to your son/daughter) and encrypted (not accessible to others). Applications are being accepted now, email: firstname.lastname@example.org
Date & Time
About The Event
This study is designed in close collaboration with parents of children with FOXP1 syndrome and collegues all over the world The aim of the study is to learn more about the independence, development and behaviour of children and adults with FOXP1 syndrome.
To verify the DNA variant that was found in your son/daughter, we would like to ask you to send us the letter from the clinical geneticist, or to give permission to request this letter at the Department of Clinical Genetics where your son/daughter was diagnosed.
Your answers and the answers of other parents will be used for a medical scientific article. When the study is completed, you will receive a copy of the article, along with a short laymen's summary and where possible advise for care and screening of your son/daughter.
If you agree to participate in the study, you can send an email to [email@example.com]. The researchers will then contact you to provide more detailed information.
Saskia Koene, clinical geneticist in training
Gijs Santen, clinical geneticist
Leiden University Medical Centre, the Netherlands