Cholangiocarcinoma-UK
Mission Statement
Cholangiocarcinoma-UK, an affiliate of the British Association for Study of Liver Disease (BASL), is a multi-disciplinary Special Interest Group (SIG) of clinicians, scientists and patient advocates whose purpose is to facilitate collaborative research, enhance service development and raise awareness of Cholangiocarcinoma. 
Aims of Cholangiocarcinoma UK
• Be the recognised leading authority on Cholangiocarcinoma in the UK
• Become affiliated to other relevant major national organisations e.g. BASO, BSG
• Facilitate basic science and clinical research as well as sample collection, including for biomarker development
• Improve the pathway to collaborative clinical trials and opportunities for research funding
• Update national guidelines and advise on policy and best practice
• Optimise and standardise clinical management across the country
• Monitor epidemiological trends accurately.
The National Cholangiocarcinoma (CCA) Audit – how you can take part
Cholangiocarcinoma-UK [BASL SIG] are collaborating with the BSG and AMMF - The Cholangiocarcinoma Charity - on a nationwide audit that will examine the diagnosis and treatment of people diagnosed with CCA in England in 2024, identifying variation and opportunities to improve care. Eligible patients have already been identified using cancer registration data held by the National Disease Registration Service (NDRS).
The audit is led by Dhanny Gomez at Nottingham University Hospitals, funded by AMMF – The Cholangiocarcinoma Charity, and delivered by Health Data Insight CIC.
The project team* are seeking a lead contact at each participating NHS trust to coordinate local involvement. Participating teams will review records for the identified patients and complete audit questionnaires through the NDRS Clinical Audit System. Guidance and support will be provided throughout.
To find out more, take part or nominate a local lead, please email [email protected] .
*Project Team
Dhanny Gomez, Nottingham
Hassan Malik, Liverpool
John Bridgewater, University College London
Helen Morement, AMMF The Cholangiocarcinoma Charity
Shahid A Khan, Imperial College London
Enclosures:
CCA Project summary: https://nww.canceraudit.encore.nhs.uk/documentation/cca/project-summary (only accessible from an NHS networked device)
CCA Data Protection Impact Assessment (DPIA): https://healthdatainsight.org.uk/wp-content/uploads/2026/06/Cholangiocarcinoma-Audit-DPIA-v3.0-ME.pdf
NDRS Clinical Audit System DPIA: https://healthdatainsight.org.uk/wp-content/uploads/2026/01/130126NDRS-Clinical-Audit-System-DPIA_V1-FullySignedMEKW.pdf
Information Governance Guidance: https://nww.canceraudit.encore.nhs.uk/documentation/cca/information-governance-guidance (only accessible from an NHS networked device)
Cholangiocarcinoma Privacy Notice: https://healthdatainsight.org.uk/cholangiocarcinoma-audit-project-privacy-notice/
Steering Committee
Nottingham University Hospitals NHS Trust È
| Chair | Professor Shahid Khan | Imperial College, London |
| Deputy chair/secretary | Dr Sheela Jayaraman | University of Birmingham |
| Patient advocate | Helen Morement | AMMF – The Cholangiocarcinoma Charity |
| Basic science representatives | Professor David Bates | University of Nottingham |
| Dr Luke Boulter | MRC Human Genetics Unit, Edinburgh | |
| Dr Chiara Braconi | University of Glasgow | |
| Professor Kevin Gaston | University of Nottingham | |
| Endoscopy representative | Professor Steve Pereira | University College / Royal Free Hospital, London |
| Hepatology representative | Dr Simon Rushbrook | Norfolk & Norwich University Hospitals |
| Clinical oncology representative | Professor Maria Hawkins | University College, London |
| Medical oncology representatives | Professor John Bridgewater | University College, London |
| Dr. Valerie Crolley | Royal Free Hospital, London | |
| Pathology representatives | Dr Tim Kendall | University of Edinburgh / Royal Infirmary Edinburgh |
| Dr Isioma Egbuniwe | University of Nottingham | |
| Surgery representatives | Professor Derek Manas | Freeman Hospital, London |
| Mr Hassan Malik | Aintree University Hospital | |
| Mr Dhanny Gomez | Nottingham University Hospitals NHS Trust | |
| Mr Alex Gordonweeks | University of Oxford | |
| Dr Jane McClements | Belfast | |
| Ms Trish Duncan | University Hospital Of Wales, Cardiff | |
| Trainee representative | Mr Rob Young | University of Liverpool |
| Other committee representatives | Dr Ed Jarman | University of Leicester |
| Dr Pilar Acedo | University College, London |
Patient Resources
AMMF has a number of informative booklets and leaflets, specifically prepared for those with cholangiocarcinoma.
Find out more on the AMMF website here: https://ammf.org.uk/patient-resources/
Resources
Annual reports
Annual report 2018-19 - Download Annual report_2018-19_CCA-UK.pdf.
1st meeting - 7 December 2018
Report - Download BASL_BSG report_Summary_Outcomes_CCA-UK Meeting 7 Dec 2018_FINAL.pdf.
Welcome presentation, Shahid Khan, St Mary’s Hospital, London - Download Welcome.pdf
Presentation on the patient/healthcare professional partnership, Helen Morement, AMMF - Download The patient_healthcare professional partnership.pdf
Presentation on Epidemiology and aetiology: What we don’t know & how can we find out, Shahid Khan, St Mary’s Hospital, London - Download Epidemiology and aetiology_What we dont know and how we can find out.pdf
Presentation on Ensuring quality: Centres of “excellence/expertise”?, Hassan Malik, Aintree University Hospital Download Ensuring quality_Centres of excellence and expertise.pdf
Presentation on Medical oncology: The unmet needs and how we meet them, John Bridgewater, UCL & Juan Valle, Christie NHS Foundation Trust - Download Medical oncology_The unmet needs and how we meet them.pdf
Presentation on Clinical oncology: Establishing novel roles in CCA therapy, Maria Hawkins, University of Oxford - Download Clinical oncology_Establishing novel roles in CCA therapy.pdf
2nd meeting - 14 November 2019
Presentation on Cholangiocarcinoma and liver fluke infection in Lao PDR, Peter Odermatt, Swiss Tropical and Public Health Institute - Download CCA and Liver Fluke Infection in Lao_P Odermatt.pdf
Presentation on Universal tumour antigens in primary liver cancers: Cholangiocarcinoma and Hepatocellular carcinoma are differentUniversal tumour antigens in primary liver cancers: Cholangiocarcinoma and Hepatocellular carcinoma are different, Ollie Rupar, University of Plymouth - Download Universal tumour antigens in primary liver cancers_Ollie Rupar.pdf
Presentation on Single molecule detection of osteopontin in nanopores using DNA molecular carriers, Micol Damiani, Imperial College London - Download Single molecule detection of osteopontin in nanopores_M Damiani.pdf
Presentation on the investigation of virus-driven intrahepatic Cholangiocarcinoma through dysregulated hepatic differentiation, Alex Kilvington, University of Leeds - Download Virus-Driven Intrahepatic CCA_A Kilvington.pdf
Presentation on the role of mesenchymalcells in Cholangiocarcinoma, Mireia Sueca Comes, University of Nottingham - Download Role of Mesenchymal Cells in CCA_M Sueca-Comes.pdf
Presentation on non-coding RNAs and the biology underpinning potential new precision medicines in Cholangiocarcinoma, Chiara Braconi, University of Glasgow - Download RNAs and biology underpinning potential new precision medicines_C Braconi 1.pdf
Presentation on Delphi process on next key questions in basic science of Cholangiocarcinoma, Shahid Khan, Imperial College London - Download Clinical and Research Priorities in CCA_S Khan.pdf
Patient representation
The AMMF is represented on the CCA-UK Steering Committee and is the UK’s only cholangiocarcinoma charity - http://ammf.org.uk/.
Global CCA Alliance
The Global Cholangiocarcinoma Alliance (GCA) has united to establish a global voice in CCA through community collaborations. The GCA has a shared vision to raise the awareness of CCA, in order to improve prevention, survival and the quality of life of CCA patients globally. CCA-UK is a partner in this Alliance. For more information, visit https://globalccaalliance.com/en.
