We undertake research projects ourselves and are keen to promote and support other research projects that benefit our community.

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.

Current research projects

We have created a forum for researchers to recruit respondents and for parents interested in participating in research to join.

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

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 hope to publish initial findings in Autumn 2023.

Family studies

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 expect to publish the findings late 2023.


We have recently been collaborating with Professor Simon Gaisford of UCL on a study around constipation, and are hoping to launch a new research project in September 2023.


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.’

Sharing the news

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.


Our collaboration with Down’s Syndrome Research Forum (DSRF) in May 2020 looked at the experiences of families around Covid.


In August 2021 to tie in with International Breastfeeding Awareness Week, we published our inaugural Breastfeeding Report. We repeated the study in 2022 publishing our latest report.

We'd love to hear from you!