Research Roundup: August 2026
Research Roundup
August 2026
In this roundup, we share updates covering post-transplant quality of life, new insights into fatigue, major funding for patient-centred symptom support, work to improve care for families with rare liver disease planning families and details of a fantastic Ask the Expert held in August.
Shape Future Post-Transplant Care: Newcastle University Study
Researchers at Newcastle University, as part of the Newcastle and Cambridge NIHR/NHSBT Blood and Transplant Research Unit in Organ Donation and Transplantation, have launched a new survey study to better understand experiences and quality of life following organ transplantation.
The study team is looking for people aged 18 or over in the UK who received a liver transplant 12 months ago or more to help refine questions about quality of life.
What is involved?
Completing online surveys and/or taking part in an interview to make sure the questions are clear and relevant.
A Different Way to Look at Fatigue in PSC
Fatigue is one of the most common and challenging symptoms experienced by people living with PSC. It can impact work, social life, and overall daily wellbeing. However, why fatigue affects some individuals severely while leaving others largely unaffected remains poorly understood.
New research from Dr Ann Troussaint’s SOMA.LIV study explores fatigue through a ‘biopsychosocial’ lens. Rather than focusing solely on liver disease markers, the six-month study looked at different biological, psychological, and behavioural factors.
What causes fatigue in PSC?
Fatigue in PSC is complex and influenced by overlapping biological and psychological factors. Identifying potentially modifiable factors provides a foundation for developing targeted, multi-disciplinary management strategies to help manage day-to-day fatigue.
$13.6 Million PCORI Award for the EMPOWER Symptom Support Study
The Patient-Centered Outcomes Research Institute (PCORI) has awarded $13.6 million funding to the EMPOWER study in the US. PSC Support helped to design this research through extensive involvement last year. This major research project explores the role of group therapy and patient-led involvement in symptom support for people living with PSC.
Key highlights of the grant include:
- Targeted Support: Investigating structured group support to help tackle persistent symptoms such as fatigue and itch.
- Patient-Led Research: Highlighting the role of patient and public involvement in shaping clinical trials.
- Improving Quality of Life: Generating robust evidence for scalable psychological and social interventions alongside clinical management.
Advancing Pregnancy Care Pathways in Rare Liver Disease
For families affected by primary sclerosing cholangitis (PSC) and other rare liver diseases, there can be increased risks and anxiety around pregnancy.
Representing PSC Support, senior research volunteer Maria Richardson presented at a European Reference Network (ERN) RARE-LIVER workshop in Zagreb to share her real-world patient insights into pregnancy with cholestatic liver disease, and contributed to discussions to ensure patient experiences directly inform emerging clinical management pathways.
Maria Richardson stated: “Not only was I able to present on my experience of PSC and pregnancy to an eminent and engaged audience, but I was able to have real input into the draft new patient pathway for pregnancy with rare liver disease.”
Help Shape Future Research: Join the PSC Support Patient Panel
Direct patient involvement ensures that clinical research, care guidelines, and international pathways are built around the real needs of our community. By sharing your lived experience, you can help researchers understand what matters most to people living with PSC. Whether reviewing patient information, offering insights on clinical trial designs, or contributing to projects like the ERN RARE-LIVER pregnancy pathway, your voice makes a direct difference. We invite patients, family members, and carers to join the PSC Support Patient Panel(opens in new tab) and help drive research forward.
The Road to Effective PSC Treatments
Whether you were able to join our live session or are catching up now, our webinar, “Ask the Experts: Towards PSC Treatments,” highlighted the significant momentum taking place in PSC research. Bringing together leading scientific minds (Professor Palak Trivedi, Professor Andreas Kremer and Professor Michael Trauner), the session explored current clinical developments, novel drug targets, and the steps needed to turn laboratory discoveries into meaningful, everyday therapies. PSC remains a condition with a high unmet need and no approved medical treatment to slow or stop its progression. However, as highlighted in our Research Strategy 2025–2030(opens in new tab), emerging research priorities, innovative trial designs, and strong multi-disciplinary partnerships offer realistic hope for the future.
Chaired by Professor Trivedi, the webinar discussed research advances in PSC:
- Professor Michael Trauner recapped on the 2-year Phase 3 trial findings for norocholic acid (NCA), highlighting its effects on fibrosis (liver scarring).
- Professor Andreas Kremer reviewed progress in treating symptom burden, specifically chronic itch (pruritus) and fatigue, using medications called ‘PPAR agonists’ and ‘IBAT inhibitors’.
- The panel members then addressed questions and gave their views on trial design, symptom mechanisms, medicine development timelines and even how different medications might work together.
Although technical at times, the recording is well worth a watch and will leave you with a sense of hope about treatments for PSC. We’ve added captions and little explainer bubbles on the screen to help it make sense to anyone non-scientific. Enjoy!
We hope these updates bring you encouragement as research moves forward. Please get in touch if you have any questions:
Martine Brown
PSC Support Co-CEO and Head of Research and Policy
ERN RARE-LIVER Management Board