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.
Evidence suggests that nasogastric (NG) feeding tubes are frequently used for infants with Down syndrome. Despite caregivers being an essential resource, relatively little is known regarding their perspectives of NG tube feeding and its impact for children with Down syndrome. Therefore, this study aimed to expand on the research to understand perspectives of mothers of young children with Down syndrome to inform how best to support them.
A new University of Warwick study, published in the American Journal of Medical Genetics Part A, is the largest of its kind in Great Britain to explore mothers’ experiences of prenatal screening for Down syndrome. Based on the views of over 300 women, the research found that screening was often presented as routine, with many mothers offered little information or chance to discuss their options. Results were frequently framed negatively, reinforcing outdated assumptions about Down syndrome, and most mothers said they did not receive enough information or support when given a higher-chance result. This builds on earlier Warwick research showing that only 38% of mothers of a baby with Down syndrome received enough mental health support during pregnancy, dropping to just 24% after birth, compared with far higher figures in the general population.
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 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.
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?
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.’
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.
