At DSUK we value the importance of research to improve the lives of people with Down syndrome and their families. We are delighted to partner with different organisations to support and promote research.
We would recommend you follow Down’s Syndrome Research Foundation for general research and Down Syndrome Education International if interested specifically in research in education for people with Down syndrome.
Warwick university conducted a survey about the maternity experiences of mothers of a young child with Down syndrome who was born in England, Scotland or Wales from 2019 to 2022. The survey was designed in collaboration with Down Syndrome UK and was developed from a previous survey conducted in 2018. 317 mothers responded to the online survey and answered questions about their experiences of prenatal testing, diagnosis, and maternity care. The report focuses on women’s experiences of support for their mental wellbeing during and after their pregnancy.
We are currently working with the University of Hertfordshire on NG tube feeding in infants with Down syndrome. If you wish to participate, please email l.k.hielscher@herts.ac.uk.
We have part funded a PhD student at the University of Warwick, to undertake research on the maternity experiences of our families in recent years.
We’re Cardiff Babylab – a research team within Cardiff University, studying how the way children move affects what they see and hear to help us understand the everyday experiences of young children with Down syndrome.
We are looking for families of children with Down syndrome to take part in our in-person and fully remote studies. Click here to sign up: https://tinyurl.com/your-sign-up
We are delighted about the probiotic study DSUK/PADS is undertaking with Prof Simon Gaisford of UCL.
This study looks at whether taking a probiotic on a regular basis has any impact on those who are prone to suffering from constipation. We know that the likelihood of having constipation is high for those with Down syndrome, and so when Simon first approached us in September 2021, Nicola was quick to respond and we have worked with him over the past 2.5 years to progress this trial. We believe it to be world-leading – the first clinical trial for children with Down syndrome with a placebo element – which is the highest scientific standard.
Registration for the study closes at 5pm on Monday 11 March. The product will be shipped w/c 25 March. Participants should take the product once per day for 12 weeks, so the trial should conclude w/c 17 June, although there is some wriggle room if you were to start a week or so late. Questionnaires will be sent out initially and at 4, 8 and 12 weeks, and there will be some incentivisation to encourage completion!
Consent form needs to be read but not completed separately. The sign up covers the consent form.
Code to view the video is Ga*6YT5?
We work extensively with Professor Richard Hastings of CEDAR at the University of Warwick and Cerebra, and as such contributed to Cerebra’s 1000 Families Study and are we are currently part funding a PhD student under Richard’s tutelage.
In 2019 we published ‘Sharing the news: the maternity experience of having a baby with Down syndrome’, which has been widely referenced to highlight the discrimination that has prevailed largely unchallenged in maternity care.
In 2022 we worked on a project around nystagmus, working with world expert Dr Maggie Woodhouse OBE of Cardiff School of Optometry. The findings were shared at the Down Syndrome Research Forum 2022 and we published a report ‘Nystagmus in children with Down syndrome The parental experience.’
