Feeding and Autoimmunity in Down’s syndrome Evaluation Study (FADES)
“We found out about the FADES study not long after Alexander was born, through our local Down syndrome support group. After I found out more about it, we were very keen to take part. The research being undertaken could be crucial to understanding the nutritional needs of children with Down syndrome.
It is very easy to take part in the study. Every 6 months, we fill in questionnaire and they have a blood, stool and urine sample test. This can be done locally ourselves, although we are fortunate to live close to Bristol where the study is based so the blood test can be done at the research centre.
The extra support we have had with questions and queries around other areas of Alexander’s health have been wonderful, and we feel privileged to be part of improving the lives of children with Down syndrome. We would encourage anyone thinking about joining the study to take the plunge!” – Mum and participant in the FADES study
The study is led by Professor J Hamilton-Shield, Dr Kathleen Gillespie, and Dr Georgina Williams and will be based at University of Bristol and University Hospitals Bristol NHS Foundation Trust. We are collaborating with the Down’s Syndrome Association and Down’s Syndrome Scotland. The study will investigate early feeding in babies and children with Down’s Syndrome (DS).
We are looking for new parents willing to complete a questionnaire about their child’s feeding and health as a young baby and at six and twelve months. We will also ask about the child’s health yearly after this until the age of 5 years old
We hope the study will help us understand why children with Down’s syndrome are more likely to experience problems with their hormones and their gut, help reduce this risk and lead to the development of new treatments to help with feeding.
We would need to collect some samples from your baby soon after birth, at six and twelve months and yearly thereafter if possible until the age of 5years. All questionnaires can be completed online (or paper versions if preferred) at home, and apart from the initial blood sample all samples can be taken at home, or during your baby’s routine health checks. You would not need any additional hospital attendances. We will provide pre-paid packaging so that all samples and questionnaires can be sent back to Bristol.
If you would like to take part in this study, or just want to know more about it please contact Dr Georgina Williams at the Bristol Biomedical Research Unit in Nutrition on the details below.
There is also a direct link to register an interest as the following website where you can also download a more detailed information sheet about the study.
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