We at the Foundation are over the moon about sharing this new research project from UCL with you! Now, it might seem odd to be so excited about stool and constipation in Down’s syndrome but it is a serious issue in our community. Our recent survey showed around 30% of 2-6 year olds are on medication for constipation, and it’s a problem that doesn’t go away as they get older.  Constipation and its treatments are often a spanner in the works for toilet training and getting ready for school.

A research team at UCL, led by Prof Simon Gaisford, is conducting a trial looking at whether constipation and gut health in children and young people with Down’s syndrome can be managed with probiotics.

New research has also begun to implicate gut health and barrier integrity (intestinal permeability AKA ‘leaky gut’) in all sorts of neurological conditions including Alzheimer’s disease. This research will be an important piece in the puzzle of understanding the complex difficulties our loved ones face.

Prof Simon Gaisford from UCL School of Pharmacy who is heading up the project has investigated the effects of probiotics on other conditions and is passionate about helping our community to have better gut health and is excited about potential benefits to their development too. Hear more about the study from him below but join us for an exclusive Facebook Live chat on the 23rd November at 18:30 UK time


The trial, which will commence in January 2022, will involve children or young people with DS taking a liquid probiotic once per day, first thing in the morning on an empty stomach, over the course of 12 weeks. Parents or carers will be asked to rate the child or young person’s constipation at the start, during and at the end of the trial using a simple questionnaire. The UCL team has partnered with Down Syndrome UK, Positive About Down Syndrome, Down’s Syndrome Research Foundation UK and 21 Together to reach out to the DS community and help recruit participants.

They are looking for children and young people (anyone aged under 18 on 1 Jan 2022) with DS. To be eligible, participants will have diagnosed constipation with or without other gut symptoms.  To learn more about the study you can download the leaflet here: DS Information Leaflet FINAL


If you would like to register your interest in your child or young person taking part in the trial, please fill in the online form available here; https://forms.office.com/r/7XjuBT1x7B. The UCL team is seeking to recruit around 500 participants, but we may be able to accommodate more depending on the level of interest. If you have any queries about the trial you can email Prof Gaisford at s.gaisford@ucl.ac.uk

We encourage you to take part in this amazing opportunity to help scientists learn more about this issue.


A big thank you to Prof Gaisford and team for doing this research and helping make a better tomorrow for our loved ones.



  1. de J R De-Paula V, Forlenza AS, Forlenza OV. Relevance of gutmicrobiota in cognition, behavior, and Alzheimer’s disease. Pharmacol Res. 2018;136:29-34. doi:10.1016/j.phrs.2018.07.007
  2. Hiippala K, Jouhten H, Ronkainen A, et al. The potential of gut commensals in reinforcing intestinal barrier function and alleviating inflammation. Nutrients. 2018;10(8):E988. doi:10.3390/nu10080988
  3. Spielman LJ, Gibson DL, Klegeris A. Unhealthy gut, unhealthy brain: the role of the intestinal microbiota in neurodegenerative diseases. Neurochem Int. 2018;120:149-163. doi:10.1016/j.neuint.2018.08.005
  4. Vanuytsel T, Vermeire S, Cleynen I. The role of haptoglobin and its related protein, zonulin, in inflammatory bowel disease. Tissue Barriers. 2013;1(5):e27321. doi:10.4161/tisb.27321
  5. Fasano A. Zonulin and its regulation of intestinal barrier function: the biological door to inflammation, autoimmunity, and cancer. Physiol Rev. 2011;91(1):151-175. doi:10.1152/physrev.00003.2008
  6. Wang W, Uzzau S, Goldblum SE, Fasano A. Human zonulin, a potential modulator of intestinal tight junctions. J Cell Sci. 2000;113(Pt 24):4435-4440
  7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6326209/