About Down's Syndrome : Information and Support Needs Survey

Researchers from St George’s, University of London, are looking for parents or carers of children who have Down’s syndrome to take part in an online European survey study.

The survey will explore parents’ and carers’ views about the information they have received or accessed about their child’s condition and their experiences of support. In light of the current situation we are all living in, the survey will also explore parents’ and carers’ views 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 help us understand the needs of parents and carers and inform actions that can best support families across Europe.

The survey is open to parents and carers of children up to the age of 10 who have one or more of the following conditions: (1) Down’s syndrome, (2) congenital heart disease (that required surgery), (3) cleft lip, and (4) spina bifida.

The survey should take around 20 minutes to complete. It is anonymous and only needs to be completed once.

More details and what’s involved can be found in the participant information sheet on the survey website at: https://www.eurolinkcat.eu/parentsarea/informationandsupportneedssurvey

Dr Elena Marcus – Elena Marcus is a Researcher at St George’s, University of London (UoL). She has a keen interest in researching the experiences of people living with long-term conditions and the experiences of their families. She has carried out previous research developing a quality of life questionnaire for people living with a rare condition.

Prof Joan Morris – Joan Morris is a Professor of Statistics at St George’s, UoL. She has a keen interest in the epidemiology and life experience of children with congenital anomalies, which started when she was the Director of the National Down Syndrome Register (2003–2015). She is leading the EUROlinkCAT project (Establishing a linked European Cohort of Children with Congenital Anomalies).

If you would like to discuss the study further, please contact the lead researcher Dr Elena Marcus at emarcus@sgul.ac.uk

Twitter: @EUROlinkCAT


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