Mitochondrial DAMPs as mechanistic biomarkers of gut mucosal inflammation in adults and children.
From Patient to Research Partner
Hear Molly share her journey as both patient and research advocate.
When Patients Lead: Transforming IBD Research
This 3-minute summary covers our recent innovative approach where patients analyzed and interpreted data from hundreds of people living with IBD, revealing perspectives often missed in traditional research.
Latest News
Coming Soon: The One-IBD Study
We're excited to announce the upcoming launch of the One-IBD Study - a new research project exploring the causes and patterns of fatigue in people with Crohn's disease, ulcerative colitis, and IBD unclassified.
This study has been shaped by valuable input from patients and our patient public involvement group, whose experiences and priorities have directly motivated the planning and setup of One-IBD.
The study will invite adults who receive their IBD care from NHS Greater Glasgow & Clyde and NHS Lanarkshire to take part in short, online wellbeing surveys and help us link this information with routine NHS data (with your consent). Healthy volunteers will also be welcome.
Stay tuned for more details and information on how to get involved.
qFIT vs Calprotectin: Which stool tests do you prefer?
We have been studying the performance of quantitative faecal immunohistochemical testing (qFIT) (also known as the bowel screening test in the UK) and comparing it against faecal calprotectin to determine its effectiveness for monitoring patients with IBD.
We are looking for patients with IBD to complete a short survey (3 minutes) to help us understand which test you prefer if it performs similarly to current options. Your input will help shape future testing approaches for IBD monitoring.
What happens if patients take the lead in an IBD Project?
We've also included a transcript of the thread for accessibility:
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What happens if patients take the lead in an IBD project?
Result: A wholly patient-led paper on "What it means to live with IBD".
🧵on how our patient-public involvement (PPI) #IBD came about....
In 2023, 1315 patients with IBD in UK and across the world took part in our work, aided by@CMF_UK,@CrohnsColitisC3, and@CrohnsColitisR. They left 415 specific comments about IBD and their lives.
Precious data to analyse and study. But how to capture, analyse and present this?
Our IBD PPI volunteers, Molly@halligan_molly and Tricia@Patricia_EKelly came out with the idea of a 'Patient-led' effort. We handed over the reins, 100% to our fab patient group.
They met, discussed and wrote up this paper over 6 months with@emmapryde7,@AerinET and Destiny.
The result is a radiant, fresh, empowering and positive perspective. Produced by the patients. But lessons for all. With no input from analytical tools, clinicians, pharma input, KOLs, researchers.
The paper is a great read, note 24 pages...(with a cup of tea?).
'This was an incredibly rewarding process and an opportunity to represent people living with IBD in a totally new way'
Molly led this group effort and originally introduced this at CCUK Patient Day in 2024.
Thank you to all our IBD patients, also our clinicians@GwoTzerHo,@chershiong,@reb_hal,@EdinUni_IRR
Next steps? Watch this space!
Long form paper also available at www.musicstudy.uk
And@HelmsleyTrust for funding the main research allowing this PPIE work to be done!
Our Lives with IBD
"It's about more than just finding biomarkers — it's about changing lives." Experience Hugo Hemmati's documentary that weaves together personal testimonies from people living with IBD and behind the scenes access to the MUSIC study's research facilities. Discover how patient experiences are directly shaping the science that could revolutionize IBD treatment.
Tackling IBD Fatigue: Your Priority, Our Research Focus
When over 1,300 patients told us fatigue was their most debilitating symptom, we listened. Our collaborative team of patients and clinicians has now produced the first findings from our comprehensive study on this challenging aspect of IBD.
Using advanced machine learning techniques guided by patient insights, we're identifying patterns that could explain why fatigue persists even during clinical remission — a crucial step toward developing targeted interventions.
Read moreHow Patients Shape Our Research
At the 2024 Crohn's and Colitis UK Patient Involvement Day, our team showcased how patient partnerships have fundamentally reshaped our research approach. The presentation highlights real examples of how patient insights led to significant improvements in our study design and outcomes.
Download Presentation Slides|CCUK PageEnd of 2023 Patient-Public Involvement Group Meeting
A fantastic afternoon with our Patient Engagement group! We discussed co-production of our IBD wellbeing paper, new work with paediatric IBD, our upcoming Edinburgh Science Festival show 'Our Lives and IBD' and welcoming Ola, our new parent patient representative!
Engaging the public at the Edinburgh Fringe Festival 2023
As part of engaging the public in research, Dr Rebecca Hall & Dr Gwo-Tzer Ho recently put on a show at the Edinburgh Fringe Festival in August 2023. Peter Ranscombe, writing for the Lancet Gastroenterology & Hepatology, summarises the event. Read more about it below.
Taking colonoscopies to the stage at the Edinburgh Fringe
Welcome to our new PPI member Aerin Thompson
I'm Aerin, a first year PhD student at The University of Edinburgh studying inflammation resolution and tissue repair.
I was diagnosed with Ulcerative Colitis back in 2014 under paediatric care. I was experiencing severe symptoms before being admitted to hospital through A&E where I was monitored for four weeks.
I like to be active and row for the university high performance team alongside my studies. Originally from Nottingham, I am enjoying the views that Edinburgh and Scotland have to offer.
Scottish Society of Gastroenterology Winter Meeting December 2022
Dr Rebecca Hall recently presented our work linking patient-reported well-being as a potential marker for our scientific biomarker studies
Download Abstract|Download Presentation Slides
Read and hear from Kris
Kris is one of our study's patient representative and he shares his story with The Herald here. His experience and views help us shape the design and conduct of our research.
Hear him share his thoughts on the study here:
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