Are you a parent or carer of a child up to 10 years old who has a cleft lip (with or without cleft palate)?
Researchers from St George’s University would like to hear your views about the information and support you’ve received for your child’s condition.
Who we are
We are a team of researchers, based at St George’s, University of London, conducting a European survey study for parents and carers of children with one or more of the following congenital anomalies: cleft lip (with and without cleft palate), spina bifida, severe congenital heart defect, Down syndrome.
The study is part of a wider project investigating the health and educational needs and achievements of children living with congenital anomalies across Europe in the first 10 years of their lives (EUROlinkCAT Project).
The project started in January 2017 and is funded by the European Union’s Horizon 2020 research and innovation programme.
The aim of the survey
The aim of this study is to explore the views of parents and carers regarding the information they have accessed and received about their child’s condition, and their experiences of support.
In the light of recent events, we are also interested in exploring the views of parents and carers about how the COVID-19 pandemic may have affected their child, their child’s medical care, support, and family life.
We hope this research will highlight any areas of unmet needs across Europe and indicate whether there are any lessons to be learnt from particular countries. This information will help us make recommendations about how best to share information with parents and carers, and how to support children and their families more effectively.
Contacting the team
If you are interested in supporting us with this work, please email Dr. Elena Marcus (the lead researcher) at [email protected] and we will send you a copy of the survey.
In terms of providing your feedback, you can choose whether you would like to add your comments to a Word document or whether you would prefer to discuss your comments with us over the phone.
Thank you for your interest in our project.
The EUROlinkCAT team