FADES Study

What is the FADES study?

FADES is an exciting study following babies with Down’s Syndrome from birth to see how events in their early lives may influence certain autoimmune conditions which babies with Down’s Syndrome are at increased risk of developing. The study has been set up at the University of Bristol but is recruiting babies under the age of 8 months from across the UK and following them until they are 5 years old.

Autoimmunity and Down’s Syndrome

Most babies and children with Down’s Syndrome will not develop autoimmune conditions but compared to their peers they are more at risk of developing conditions where the body reacts against its own cells including conditions such as thyroid problems, diabetes and coeliac disease (which causes problems with the gut). If we are able to identify factors that increase the risk of these conditions developing then hopefully in the future we will be able to lower this risk.

What does the study involve?

Thanks to the help and support of Down’s Syndrome Scotland and the Down’s Syndrome Association the study is advertised to new parents, if they are interested in taking part the majority of the study can be done at home and does not require additional appointments. The study includes detailed questionnaires which can be completed online or on paper. These ask about babies feeding, the issues that families have with feeding and what support they receive. From this study we may be able to help families in the future by identifying the issues with feeding, dispelling myths and identifying where support could be improved. The questionnaires also asks about medical conditions, infections and a little bit about family history.

The study also involves collecting samples including some cells, collected by rubbing the inside of the baby’s cheek with a soft swab,  these will be used to look at the baby’s genes (little packets of information within the cells) especially those we know are associated with autoimmune conditions. We are also collecting poo samples to look at the natural bacteria that live in the gut which is considered to have an effect on the development of immunity. Urine samples are collected to see if there are any signs of any of the babies developing diabetes although we expect that very few will develop diabetes during the 5 years that they are in the study. We are also collecting small blood samples from heel pricks which will be used to see if there are any antibodies associated with autoimmune conditions.

 Update

We are thrilled to say that we now have 50 fantastic families enrolled in the FADES study and continue to get more every month. Four of our babies have just recently celebrated their 2^nd birthday, one of whom is now a big sister!!

Our families have been completing the questionnaires mostly online providing us with a detailed picture of their experiences of feeding a new baby with Down’s Syndrome. These have ranged from families who have exclusively breastfed their babies to those that have experienced difficulties with feeding and required intervention. We are also getting information on the medical problems that they face and the range of professionals involved in their care.

We have also had success in our sample collection, families have been collecting stool samples and urine samples at home using the kits that we provide. Blood samples have been coordinated with routine appointments.

A little about the Research Team

The study is being led by Professor Julian Hamilton-Shield, Dr Kathleen Gillespie and Dr Georgina Williams. Professor Hamilton- Shield and Dr Gillespie both have a long standing interest in children with Down’s Syndrome and have previously published articles on Down’s Syndrome and Diabetes. Dr Georgina Williams is a paediatric registrar, this study will form part of her Clinical PhD in Child Health.

The study is sponsored by the University of Bristol and is funded by the National Institute of Health Research, Bristol Biomedical Research Unit in Nutrition.

Contact Us….

If you are interested in finding out more about this study please contact fades-study@bristol.ac.uk or phone 0117 342 1756. You can also visit their webpage at www.bristolnutritionbru.org.uk  and follow the FADES link on the left hand side of the page which will enable you to download a participant information sheet.