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Wellcome-MRC Cambridge Stem Cell Institute

 
Matt Zilbauer and a young person at the microscope

Last week, the Cambridge Stem Cell Institute (CSCI) welcomed paediatric patients and their families to the Jeffrey Cheah Biomedical Centre for a visit, where they made Play-Doh cells in petri dishes, practiced pipetting samples, and took a tour of the labs with the Milner Therapeutics Institute.

Patients of Dr Matthias Zilbauer (Department of Paediatrics, CSCI) were invited to join him, the scientists from his group, Research Nurse Claire Glemas, and other families to discuss Inflammatory Bowel Disease (IBD) as part of their commitment to give patients a voice in research. This event, spearheaded by Dr Zilbauer with support from the CSCI Public Engagement team, was designed to raise awareness of IBD, facilitate a community environment for patients and their families, and bring patient experience into the care they receive.

 

IBD Research with the Zilbauer Group

IBD is a term used to describe two different conditions: ulcerative colitis and Crohn’s disease, neither of which have any known cure. IBDs are becoming more common, and while people of any age can get IBD, it’s usually diagnosed between ages 15 and 40.

The unique feature of the Zilbauer Group is that they often work with much younger patients, ranging from 5-16 years of age – a demographic that is increasingly being diagnosed with IBD. Dr Zilbauer’s research currently focuses on discovering the cause and variations of IBD in patients, and this Patient Day provided an opportunity to prioritise time with these young patients and their parents.


Practicing pipetting at Patient Day. Photo credit: Seb Tucknott

 

Throughout the half-day event, the group provided creative and scientific activities for the young people, and offered an atmosphere of support and an interactive learning group for the parents.

As part of the project, the group’s patient/parent representative Jen Rose recently produced an illustrated booklet designed for kids to help them learn more about IBD, including activities and facts about the science behind their conditions. 
 

Research Nurse Claire Clemas and one of the young attendees of the Patient Day event, and an insert of the booklet. Photo credit: Seb Tucknott and Jen Rose

 

Dr Zilbauer said, “It was great to see our patients interacting with each other whilst experiencing a real taste of science. It was also extremely rewarding to hear so many positive comments from their parents, e.g. that this a unique and indeed first opportunity for them to meet other parents of children suffering from IBD. They found the exchange of experience hugely valuable and in many ways reassuring/comforting.”

 

Research Nurse Claire Glemas, who supports Dr Zilbauer's hospital work, was instrumental in the public engagement efforts. Claire said, “We set up our patient day as a way of giving back our time to the amazing families and young people we work with, and without whom our research wouldn’t be possible. And how often do you get to hear ‘that was the best day of my life’ after an event (which is direct quote from one of our young people at the patient day!)”

 

Covid-19 had delayed original plans to host a Patient Day, but the group (and the young people) hope that these events can become a regular occurrence in the future.

 

Find more information on Dr Zilbauer’s work here, and more about CSCI’s Public Engagement programme here.

 

From the Group

“I work as the paediatric research nurse for the paediatric gastroenterology team. I am passionate about my work, and strongly believe that we should protect children through research, rather than protect them from research. My job is never the same day to day, and clinical trials in children have a default level of complexity relating to regulatory, methodological, ethical and administrative issues!”

Claire Glemas, Research Nurse with the Zilbauer Group 

“To me this is what patient engagement should look like – generating excitement for our research, receiving constructive feedback from parents, and most of all a huge amount of fun for our paediatric patients!”

Dr Matthias Zilbauer