Publication history
Improving the lives of people with primary sclerosing cholangitis
Our Commitment to Evidence-Based PSC Research
At PSC Support, we are the only UK organisation solely dedicated to primary sclerosing cholangitis (PSC). We drive progress by co-authoring high-quality, evidence-based research alongside the world’s leading clinical and scientific experts. By integrating the patient voice directly into scientific discourse, we help bridge the gap between discovery and real-world care.
How we move PSC research forward:
- The PSC Patient Perspective is Integrated: We bring real-world patient data and experience into the interpretation of research findings, ensuring the results reflect what is actually happening for people with PSC.
- Unmet Needs are Clearly Identified: We help define and highlight the most critical gaps in our current understanding of PSC, ensuring that the research community focuses on the areas where patients need progress the most.
- Evidence-Based Care is Strengthened: We contribute our experience to national and international clinical guidelines, helping to ensure that the best available evidence, informed by the patient experience, is used to improve daily care.
Our publication history from over the last 15 years demonstrates our long-term commitment to turn scientific discovery into real-world tools and treatments that help people with PSC live well and for longer. Through this collaborative approach, we ensure that clinical, pharmaceutical, and policy decisions are informed by independent, patient-centred evidence.
Our Research Impact (15 Years of Progress)
Our publication history reflects a strategic, multifaceted approach to advancing the understanding, management, and treatment of PSC. Through our collaborative work with the global scientific community, we have helped transition PSC research from a focus on basic understanding toward tangible, patient-centred improvements.
- Influencing Clinical Guidelines and Standards of Care
Many of these publications directly contribute to the development of national and international clinical guidelines. By ensuring that patient voices and real-world data are represented, our work helps shape how medical professionals diagnose and manage the disease.- Impact: Establishing best practices based on current, rigorous evidence (e.g., British Society of Gastroenterology (BSG) and UK-PSC guidelines).
- Prioritising Research That Matters to Patients
A significant portion of our work focuses on identifying what patients find most challenging, which helps researchers prioritise efforts that lead to clinically meaningful change.- Impact: By conducting studies on patient-reported quality of life, research priorities, and symptom burdens like pruritus (itching) and psychological distress, we have directed the scientific community’s attention toward the symptoms that actually affect daily living.
- Improving Psychological and Holistic Support
Our research history highlights a move beyond just liver health to address the psychological impact of living with a rare, chronic disease.- Impact: Publications concerning psychological wellbeing and the design of personalised psychological interventions have provided the evidence base for better holistic care, helping clinicians understand that treating PSC requires addressing mental health alongside physical symptoms.
- Facilitating Clinical Research and Trials
We work to demystify the research process and encourage patient participation.- Impact: By documenting the patient experience in clinical trials and surveys (including during the COVID-19 pandemic), our collaborative work has provided invaluable data that helps researchers design better, more inclusive trials that are easier for patients to participate in.
Publication History
Kowdley KV, Safer R, Gomel R, Hatchett J, Walmsley M, Burman J, Weinbaum S, Goldsmith K, Nunes T, Terner-Rosenthal J, Garner W. A multinational survey assessing the impact and burden of pruritus on patients with primary sclerosing cholangitis. Hepatology Communications. 2026 Mar 1;10(3):e00904.
Catanzaro E, Lapitz A, Milkiewicz P, Elgozair M, Ahmed F, Hov JR, Folseraas T, Carbone M, Macias RI, Schramm C, Alonso C. Blood Metabolomic Signature for Diagnosing Cirrhosis and Predicting Prognosis in Patients with Primary Sclerosing Cholangitis. Digestive and Liver Disease. 2026 Feb 1;58:S77-8. (Congress abstract) https://www.sciencedirect.com/science/article/pii/S1590865826001325
O'brien A, China L, Corless L, Kallis Y, Ahmed N, Walmsley M, Blackstone J, Freemantle N, Palaniyappan N, Balakrishnan I, Mcpherson S. Cotrimoxazole for Patients With Cirrhosis and Ascites and no Prior Spontaneous Bacterial Peritonitis: The ASEPTIC Clinical Trial (Primary Antibiotic Prophylaxis Using co-Trimoxazole to Prevent Spontaneous Bacterial Peritonitis in Cirrhosis). InHEPATOLOGY 2026 Jan 1 (Vol. 83, No. 1). (Congress abstract)
Stallbaum F, Lüdecke D, Dalekos G, Rigopoulou E, Londoño MC, Rodríguez-Tajes S, Madaleno J, Dellbrügge F, Taubert R, Janik MK, Milkiewicz P. Discrimination as a Social Determinant of Health in Autoimmune Liver Diseases: Findings from the European Reference Network on Hepatological Diseases (ERN RARE-LIVER). Zeitschrift für Gastroenterologie. 2026 Jan;64(01):P1-27. (Congress Abstract)
Hussain N, Motta RV, Gungabissoon U, Casillas L, Mukherjee S, Ribeiro A, Mclaughlin MM, Hagan K, Bhandal K, Rogers P, Walmsley M. Pruritus is common in primary sclerosing cholangitis, persists over time, and its intensity is associated with disease severity. Hepatology. 2025 Dec 5:10-97.
Tavabie O, Thorburn D, Ferguson J, Cross T, Hollywood C, McPherson S, Aspinall R, Allison M, Yeoman A, Heydtman M, McDougall N. P117 A call for inclusion in addressing variation in UK hospital liver care; a review of national audits, surveys, guidelines and guidance documents from the last five years. Gut. 2025 Oct 1;74(Suppl 4):A93-.(BASL Congress abstract)
Hussain N, Abbas N, Bhandal K, Rogers P, Burke E, Hull D, Walmsley M, Hanford P, Ferguson J, Trivedi PJ. THU-339-YI UK validation of the simple cholestatic complaints score: a patient reported outcomes measure in primary sclerosing cholangitis. Journal of Hepatology. 2025 May 1;82:S335.
Stallbaum F, Auhuber IA, Cazzagon N, Dalekos G, Drenth FD, Gerussi A, Gevers TJ, Janik MK, Kolev10 M, Kuiper11 M, Leburgue12 A. Impact of Social Determinants of Health on Outcome of Autoimmune Liver Diseases. (EASL poster)
Elzubeir A, High J, Hammond M, Shepstone L, Pond M, Walmsley M, Trivedi P, Culver E, Aithal G, Dyson J, Thorburn D. Assessing brodalumab in the treatment of primary sclerosing cholangitis (SABR-PSC pilot study): protocol for a single-arm, multicentre, pilot study. BMJ Open Gastroenterology. 2025 Mar 1;12(1):e001596. https://bmjopengastro.bmj.com/content/12/1/e001596.abstract
Quraishi MN, Cheesbrough J, Rimmer P, Mullish BH, Sharma N, Efstathiou E, Acharjee A, Gkoutus G, Patel A, Marchesi JR, Camuzeaux S. Open Label Vancomycin in Primary Sclerosing Cholangitis-Inflammatory Bowel Disease: Improved Colonic Disease Activity and Associations With Changes in Host–Microbiome–Metabolomic Signatures. Journal of Crohn's and Colitis. 2025 Feb;19(2):jjae189. https://doi.org/10.1093/ecco-jcc/jjae189
Stallbaum F, Adao I, Auhuber C, Cazzagon N, Dalekos G, Drenth JP, Gerussi A, Gevers TJ, Janik MK, Kuiper M, Lambert H. Exploring the Role of Social Determinants of Health in autoimmune liver disease–a pilot study within the European Reference Network on hepatological diseases. Zeitschrift für Gastroenterologie. 2025 Jan;63(01):P2-30. DOI: 10.1055/s-0044-1801054
Horst LJ, Kempski J, Walmsley M, Huber S, Schramm C. PSC and colitis: A complex relationship. Hepatology.:10-97.DOI: 10.1097/HEP.0000000000001236 (Jan 2025)
Quraishi MN, Cheesbrough J, Rimmer P, Mullish BH, Sharma N, Efstathiou E, Acharjee A, Gkoutus G, Patel A, Marchesi JR, Camuzeaux S. Open label vancomycin in primary sclerosing cholangitis-inflammatory bowel disease: improved colonic disease activity and associations with changes in host-microbiome-metabolomic signatures. Journal of Crohn's and Colitis. 2024 Dec 14:jjae189. https://doi.org/10.1093/ecco-jcc/jjae189
Hussain N, Ferguson J, Gungabissoon U, Casillas L, Mukherjee S, Ribeiro A, Mclaughlin M, Walmsley M, Hanford P, Trivedi P. P342 Pruritus in primary sclerosing cholangitis and implications for clinical trial design.
Rossi S, Walmsley M, Thorsen B, Hatchett J, Evon D, Reeve B, Gomel R, Vyas M, Safer R, Goldsmith K, Garfield A. Defining Acute Cholangitis As A Clinical Outcomes Endpoint In Adults With Primary Sclerosing Cholangitis (Psc): Results Of A Multinational Patient Survey To Develop A Patient-Reported Outcomes Measure (PROM). HEPATOLOGY 2024 Oct 1 (Vol. 80, pp. S1828-S1829).
Hussain N, Ma C, Hirschfield G, Walmsley M, Hanford P, Vesterhus M, Kowdley K, Bergquist A, Ponsioen C, Levy C, Assis D. Protocol for the development of a core outcome set for clinical trials in primary sclerosing cholangitis. BMJ open. 2024 Jun 1;14(6):e080143. https://bmjopen.bmj.com/content/14/6/e080143
Hussain N, Ferguson J, Abbas N, Gungabissoon U, Bhandal K, Burke E, Hull D, Rogers P, Casillas L, Mukherjee S, Ribeiro A. THU-160 Long-term variability of pruritus in primary sclerosing cholangitis and implications for future clinical trial design. Journal of Hepatology. 2024 Jun 1;80:S332. https://doi.org/10.1136/gutjnl-2024-BSG.424
Soret PA, Tomsin B, Willemse JA, Walmsley M, Gnutti V, Papenthin W, Uhlenbusch N, Gevers TJ, Cazzagon N, Schramm C, Corret P. WED-158-YI Disease experience and care expectations in european patients with immune-mediated liver disease. Journal of Hepatology. 2024 Jun 1;80:S712.https://www.postersessiononline.eu/173580348_eu/congresos/EASL2024/aula/-WED_158_YI_EASL2024.pdf
Rushbrook S, Kendall TJ, Zen Y, Albazaz R, Manoharan P, Pereira SP, Sturgess R, Davidson B, Malik H, Manas D, Heaton N. British Society of Gastroenterology Guidelines for the Diagnosis and Management of Cholangiocarcinoma. Gut. 2023 Sep 5.
Hussain N, Hirschfield B, Ferguson J, Abbas N, Bhandal K, Rogers P, Burke E, Hull D, Gungabissoon U, Casillas L, Mukherjee S. P34 Burden, impact and variability of pruritus in primary sclerosing cholangitis (PSC) over time: a prospective observational study. Gut. 2023. 72 S3. https://doi.org/10.1136/gutjnl-2023-BASL.50
Walmsley M, Tornai D, Cazzagon N, et al. Patient-reported quality of care in primary sclerosing cholangitis [published online ahead of print, 2023 Jun 13]. Liver Int. 2023;10.1111/liv.15650. doi:10.1111/liv.15650
Hussain N, Hirschfield B, Ferguson J, Abbas N, Bhandal K, Rogers P, Burke E, Hull D, Gungabissoon U, Casillas L, Mukherjee S. Burden, impact and variability of pruritus in primary sclerosing cholangitis (PSC) over time: a prospective observational study. Journal of Hepatology. 2023. Jun. 78, SUPPLEMENT 1, S398-S399 https://doi.org/10.1016/S0168-8278(23)01056-5
Bergquist A, Walmsley M, Tornai D, Cazzagon N, Leburgue A, Mrzljak A, Lenzen H, Carbone M, Madaleno J, Lleo A, Junge N. Patient reported gaps between current practice and new practice guidelines for primary sclerosing cholangitis. Journal of Hepatology. 2023 Jun 1;78:S383-4.
Kowdley KV, Safer R, Gomel R, Hatchett J, Walmsley M, Burman JA, Weinbaum S, Goldsmith K, Garner W, McKibben A, Chien E. Tu1587 IMPACT OF PRURITUS IN PRIMARY SCLEROSING CHOLANGITIS (PSC) FROM THE PATIENT PERSPECTIVE: A MULTI-NATIONAL STUDY. Gastroenterology. 2023 May 1;164(6):S-1426.
Gleeson D, Walmsley M, Trivedi PJ, Joshi D, Rea B. Surveillance for cholangiocarcinoma in patients with primary sclerosing cholangitis: Can we be more proactive? Frontline Gastroenterology. 2022 Aug 4. http://dx.doi.org/10.1136/flgastro-2022-102172
Kowdley K, Safer R, Gomel R, Hatchett J, Walmsley M, Burman J, Weinbaum S, Goldsmith K, Kim M, Garner W, McKibben A, Chien E. Impact of pruritus in primary sclerosing cholangitis (PSC): a multinational survey. Journal of Hepatology. 2022 vol. 77(S1): S119–S388
Marcus E, Stone P, Thorburn D, Walmsley M, Vivat B. Quality of life (QoL) for people with primary sclerosing cholangitis (PSC): a pragmatic strategy for identifying relevant QoL issues for rare disease. Journal of Patient-Reported Outcomes. 2022 Dec;6(1):1-2. https://doi.org/10.1186/s41687-022-00484-5
Fatourou E, King D, Hyde S, Walmsley M, Alexander G, Trivedi P, Rushbrook S, Thorburn D, PSC IC. PMO-35 UK national audit on diagnosis and management of colitis in patients with primary sclerosing cholangitis. dx.doi.org/10.1136/gutjnl-2021-BSG.174
Francque SM, Marchesini G, Kautz A, Walmsley M, Dorner R, Lazarus JV, Zelber-Sagi S, Hallsworth K, Busetto L, Frühbeck G, Dicker D. Non-alcoholic fatty liver disease: A patient guideline. JHEP Reports. 2021 Oct 1;3(5):100322. https://doi.org/10.1016/j.jhepr.2021.100322
Zecher B, Buescher G, Willemse J, Walmsley M, Taylor A, Leburgue A, Schramm C, Lohse AW, Sebode M. Prevalence of COVID-19 in patients with autoimmune liver disease in Europe: A patient-oriented online survey. United European Gastroenterol J. 2021 doi.org/10.1002/ueg2.12100
Walmsley M, Matičič M, Butí M. Impact of COVID-19 on the care of patients with liver disease: EASL-ESCMID position paper after 6 months of the pandemic (Lay version). 2021. Available from: https://easl.eu/patient-synergies#useful-resources.
Walmsley M, Butí M. Care of Patients with Liver Disease during the COVID-19 Pandemic (Lay version). 2020. Available from: https://easl.eu/patient-synergies#useful-resources.
Ranieri V, Kennedy E, Walmsley M, Thorburn D, McKay K. The Primary Sclerosing Cholangitis (PSC) Wellbeing Study: Understanding psychological distress in those living with PSC and those who support them. PLoSONE 2020, 15(7): e0234624. doi.org/10.1371/journal.pone.0234624
Ranieri V, Kennedy E, Walmsley M, et al. Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol. BMJ Open 2019;9:e031417. doi: 10.1136/bmjopen-2019-031417
McKay K, Ranieri V, Walmsley M, et al. O16 Rare but still heard: how innovative methods can enhance research inclusion. BMJ Open 2019;9:doi: 10.1136/bmjopen-2019-QHRN.16
Chapman MH, Thorburn D, Hirschfield GM, Websiet GJ, Rushbrook SM, Alexander GA, Collier J, Dyson AK, Jones DEJ, Patanwala I, Thain C, Walmsley M, Pereira SP. British Society of Gastroenterology and UK-PSC guidelines for the diagnosis and management of primary sclerosing cholangitis Gut.Published Online First: 01 June 2019. doi:10.1136/ gutjnl-2018-317993
Walmsley M, Leburgue A, Thorburn D, Hirschfield G, Trivedi P. Identifying research priorities in primary sclerosing cholangitis: driving clinically meaningful change from the patients’ perspective. Journal of Hepatology. 2019 Apr 1;70:e412-3 [poster]
Gurusamy KS, Walmsley M, Davidson BR, Frier C, Fuller B, Madden A, ...Cowlin M. et al. Top research priorities in liver and gallbladder disorders in the UK. BMJ Open. 2019;9(3):e025045. doi: 10.1136/bmjopen-2018-025045
Goode EC, Clark AB, Mells GM, Srivastava B, Spiess K, Gelson WT, Trivedi PJ, Castren E, Vesterhus MN, Karlsen TH...Walmsley M. Factors Associated With Outcomes of Patients With Primary Sclerosing Cholangitis and Development and Validation of a Risk Scoring System. Hepatology. 2018 Dec 19. doi.org/10.1002/hep.30479
Ranieri V, McKay K, Walmsley M, Senior R, Thorburn D, Kennedy E. Primary sclerosing cholangitis and psychological wellbeing: a scoping review. InSeminars in liver disease. 2018 Nov 22. Thieme Medical Publishers. doi: 10.1055/s-0038-1676099
Trivedi P, Mytton J, Evison F, Kamarajah SK, Reece J, Iqbal T, Cooney R, Thompson F, Walmsley M, Ferguson J, Hirschfield G. A nationwide population-based evaluation of mortality and cancer-risk in patients with ulcerative colitis/primary sclerosing cholangitis–young age at diagnosis and the unmet need to reduce mortality. Journal of Hepatology. 2018 Apr 30;68:S220-1. THU-208
Newsome PN, Cramb R, Davison SM, Dillon JF, Foulerton M, Godfrey EM, Hall R, Harrower U, Hudson M, ... Walmsley M, Yeoman A. Guidelines on the management of abnormal liver blood tests. Gut. 2018 Jan 1;67(1):6-19. doi: 10.1136/gutjnl-2017-314924 Open Access British Society of Gastroenterology
Hirschfield GM, Dyson JK, Alexander GJM, Chapman MH , Collier J , Hübscher S, Patanwala I , Pereira SP, Thain C, Thorburn D, Tiniakos D, Walmsley M, Webster G, Jones DEJ. The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines. Gut. 2018 Mar 28:gutjnl-2017. Open Access British Society of Gastroenterology
Greveson K, Ibarra A, Walmsley M, Thorburn D. Primary sclerosing cholangitis and the role of the clinical nurse specialist. Gastrointestinal Nursing. 2015 Dec 2;13(10):36-45. doi.org/10.12968/gasn.2015.13.10.36
Hirschfield, GM, Thain, C, Walmsley, M, Brownlee, A, & Jones, DE. Liver disease in the UK. The Lancet. 2015 385(9967), 503. Open Access doi:10.1016/s0140-6736(15)60192-1
Heggie S. Primary sclerosing cholangitis. Gastrointestinal Nursing. 2012;10(3):8-. doi: 10.12968/gasn.2012.10.3.8.
Not all of these publications are Open Access. Please get in touch if you would like to read them.
For reports, including 'Clinical Need in PSC and Clinically Meaningful Change: What is Important to Patients?', see The voice for patients in PSC research.