July 2025 Research Roundup
Research Roundup
July 2025
Funding Research
PSC Support is only able to fund research thanks to your donations. We're currently reviewing research applications asking for nearly £363,000. Of course, we can’t fund everything, and we're often asked how the charity decides what to fund.
The answer is that we take lots of expert advice! PSC Support is a proud member of the Association of Medical Research Charities. Membership means that we have demonstrated that we evaluate funding applications in a robust and fair way that is to a high standard. This is important as we don’t want to fund poor quality research and waste precious charity funds.
It takes several months to review funding applications and involves six stages. As I write this, we're at Stage 3, inviting experts from all over the world to help us evaluate this year’s applications.
Get Involved
We are passionate about ensuring the work we do and research we support is centred around the needs and wishes of people affected by PSC.
We are often looking for volunteers with experience of living with PSC to join our Patient Panel Pool and help with short, one-off projects. The work varies from talking to researchers about their plans, reviewing information that is meant for patients, to advising researchers about what’s important to us. We email you when opportunities to get involved arise and there’s never an obligation to take part. Last week we ran a focus group with PSC patients and a researcher who is developing a GP breath test to detect cancer. In August, we'll be talking to researchers who are interested in the microbiome and its relationship with PSC. If any of this interests you, please complete this form so I can email you about this and other projects.
Clinical Trial News
Professor Thorburn presented 15 week data1 from the SPRING clinical trial at a prestigious UK meeting for gastroenterologists last month. Attendees heard that the safety and tolerability of the trial drug (nebokitug) was comparable to the placebo (dummy drug) and that after 15 weeks, it improved inflammation and fibrosis markers. He confirmed that the results support the need for a phase 3 clinical trial. We are in touch with the pharmaceutical company, Chemomab Therapeutics.
Thorburn D, Barclay ST, Joshi D, Trivedi P, Cramp M, Chimakurthi CR, Mells G, Culver E, Frankel M, Lawler J, Mor A. O33 CM101, a novel monoclonal antibody targeting CCL24, in patients with primary sclerosing cholangitis: results from spring study.
Fit for the Future: The 10 Year Health Plan for England
This month, the Government set out plans to ‘create a new model of care’ in its 10 Year Health Plan for England. I was pleased to see the importance of research and innovation highlighted. The paper acknowledges that, “The system for getting new medications to patients is needlessly complicated.” and lays out plans to simplify and streamline the processes involved in medicine development. This is vital for people with PSC as treatments rely on clinical trials and today we are seeing clinical trials testing more promising treatments for PSC than ever before.
Furthermore there is ambition for the UK to ‘lead the world in developing the treatments and technologies of the future’. They will do this by investing in research, by making it quicker and easier to take part in clinical trials and investing in research harnessing cutting-edge technologies. This aligns with the aims of the ‘UK’s Modern Industrial Strategy’ which aims to make the UK one of the world’s top three life sciences economies.
These are ambitious plans which we welcome, but they must be properly resourced, especially if rare diseases like ours are to benefit. PSC Support will continue our involvement in Rare Disease Research UK (RDR UK), the body established to bring together experts to enhance the UK’s rare disease research ecosystem.
RDR UK and LifeArc Centre for Acceleration of Rare Disease Trials (ARDT) are working together to better understand the experiences and needs of the rare disease research community when navigating the UK regulatory pathways and frameworks. While the aims of the 10 Year Health Plan may take a decade to realise, our RDR UK work is likely to have a practical impact, sooner.
More Research Advocacy
Talking of making an impact, this month volunteer research officer, Maria Richardson, provided feedback to a national project that is developing quality standards for the management of liver disease for both outpatients and inpatients. Our small team has also been getting ready for the launch of a new service to provide liver transplants for some* bile duct cancer patients, and working on developing a blueprint for the ideal PSC clinic as well as working with researchers to speed up access to a blood test for bile duct cancer. And today, Mark Chatterley, our Operations Manager is in Birmingham advocating for PSC patients in a meeting about liver transplant research and what's important to focus on.
That's just a snapshot of our research advocacy this month. It is critical work if we are to improve PSC healthcare and ensure the right research is done the right way. If you think you've got the skills to support this important work, do please get in touch.
*more news on that soon. This will only be suitable for a very small number of people
Questions?
If you have any questions about this or any other aspect of our research work, please send me an email.
Martine Walmsley
PSC Support Head of Research Strategy
ERN RARE-LIVER Management Board and PSC Working Group Co-Lead