CIR hosts patient and family day exploring paediatric IBD
On Saturday 21 May, CIR held an event to support young people with IBD and share current IBD research.
After two years of online engagement, CIR hosted an inspiring in-person event, "Paediatric IBD: Let's Talk About Research" at Child Life and Health, Edinburgh's Royal Hospital for Children and Young People (RHCYP).
The afternoon event explored paediatric inflammatory bowel diseases (IBD), like Crohn's Disease and Ulcerative Colitis. These chronic inflammatory conditions have complex causes and do not currently have cures.
The event invited young people with IBD, along with their families, to tour research labs and clinical facilities, listen to short talks, ask questions from experts, and connect with others with similar conditions.
The event focused on hopes for IBD research and aimed to foster relationships, inspire attendees and let them know that advancing understanding of IBD is a research priority. The event was organised by CIR IBD specialists Professor David Wilson, Research Associate Michelle Wilson, and Dr Gwo-tzer Ho.
Talking About Research
As part of the day, patients and their families listened to talks describing current and the future IBD research, including studies focused specifically on paediatric IBD as well as a new all-ages IBD research project.
Event attendees also had a chance to tour a science laboratory and the Children’s Clinical Research Facility in RHCYP, while younger children were entertained by the Edinburgh Children’s Hospital Charity's Wellness Team, as they decorated a space rocket together.
Our novel all-ages IBD research-focused public engagement event was an overwhelming success. This event brought together patients and families affected by paediatric-onset IBD and introduced them to CIR IBD scientists and clinical IBD researchers from RHCYP - the Royal Hospital for Children and Young People.
Event attendees had a chance to discuss research studies with experts, asking their questions and prompting discussion about the future direction of IBD research. Many comments and suggestions from patients and families were noted down by CIR's research team, to influence IBD clinics and future IBD research.
I am delighted and also humbled to have met so many patients and families. Our team of scientists have really enjoyed sharing their work. My best moment was hearing feedback from a patient, ‘Now I know why it is called translational [research] - it comes back to us!’
Building an ‘All-ages’ scientific human research program is top priority and we recognise the importance of having our patients join us on the journey to improve our understanding and treatment of IBD.
As well as the connections made between patients and research scientists, the event also acted as a networking opportunity and safe space for families to connect with each other.
Patients and their families enjoyed the ability to meet other families affected by IBD, to share experiences and learn from each other. One teenage attendee remarked "I've never met anyone with my disease before" in reference to the other young people in the room.
New Hopes for IBD
The event ended with a "Hopes for IBD" activity. Attendees identified their hopes for their disease, their treatment, their care, their lives and their future. The hopes were written on stars, placed around the decorated space rocket, together symbolising these hopes ‘taking off’ into the future, where one day they might come true.
A word cloud of these hopes is shown to the right. Common themes include raising awareness, especially in schools, improving mental health support, improving the flexibility of treatment options, and limiting the number of required infusions and clinic appointments.
Event attendees had an overwhelmingly positive response to the event, with many commenting that they felt supported and uplifted after the event.
Some specific comments included:
- “All the enthusiasm is so nice. Everyone is so enthusiastic about [IBD research]. As a mom who is newly dealing with this, it’s very reassuring”
- “It’s great to hear about how the science and studies go through the different stages”
- “Today was really interesting and useful.”
- “A great day!”
- "Thank you. The passion and commitment by everyone was evident and I feel so supported."
- "[After the event I felt] that we had more information and hope. [I'm] impressed at the amount of research going on and would now consider taking part in trials."
CIR aims to hold similar events in the future to showcase ground-breaking IBD research and engage patients in the research process.
The Centre for Inflammation Research hosted this event in collaboration with the University's Child Life and Health department, the Jon Moulton Charitable Trust, the Edinburgh Children's Hospital Charity, and the Royal Hospital for Children and Young People.