MUSIC & Mini-MUSIC
Mitochondrial DAMPs as mechanistic biomarkers of gut mucosal inflammation in adults and children.
Molly Halligan, Patient Representative
Listen to her experience on taking part in IBD research.
John Rysdale, Patient Representative
on what this study is about and why you should consider taking part.
Latest News
What happens if patients take the lead in an IBD Project?
What happens if patients take the lead in an IBD project?
— Edinburgh IBD Science (@Edin_IBDScience) March 23, 2025
Result: A wholly patient-led paper on ''What it means to live with IBD'.
🧵on how our patient-public involvement (PPI) #IBD came about....#Crohns #colitis #PPIE #patientinvolvementhttps://t.co/ewo9otZQC3
Read the preprinthere.
We've also included a transcript of the thread for accessibility:
Click to view full thread transcript
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
Watch 'Our Lives with IBD', a short documentary film by Hugo Hemmati. The film features people involved with the MUSIC study discussing their experiences with IBD, while offering viewers a behind-the-scenes look at laboratory research in action.
You've told us that fatigue is one of the key things we should study
We performed an online survey last year and are now pleased to present the initial results of a joint effort between patients and clinicians to study fatigue in IBD.
Our patient-public involvement group summarises the full findings of the online survey and we have built an initial machine learning pipeline to better understand fatigue in IBD.
Read more
How Patients Shape Our Research
We recently presented on how patients influence our research at the Crohn's and Colitis UK Patient Involvement in Research Day.
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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