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Direct link to this page: http://www.EUROlinkCAT.eu/parentsarea/informationandsupportneedssurvey

AboutAbout the survey


EUROlinkCAT Information and Support Needs Survey


About the survey

We would like to invite you to take part in this European online survey which aims to explore your thoughts about (1) the information you have received about your child’s health condition and your experiences of support, and (2) how the COVID-19 pandemic may have affected your child, their medical care, support, and your family life.

We would be very grateful for your participation in the survey if you are a parent or carer (including adoptive and foster parents) of a child up to 10 years of age and who was born with one or more of the following health conditions:

  • Cleft lip (with or without cleft palate)
  • Spina bifida
  • Congenital heart disease that required surgical intervention
  • Down’s syndrome

The survey will take approximately 20 minutes to complete and you will only need to complete it once. The survey will be anonymous, and we will not collect any personally identifiable information about you.

How to take part

The survey is currently available in eight languages. The Italian version will be available soon.

If you would like to take part, please click one of the following links:

For more information about the survey please see the Participant Information Sheet or you can contact Dr Elena Marcus (the lead researcher for this study) at emarcus@sgul.ac.uk

The survey will be open until 30 June 2021.