The natural history of autoimmune sclerosing cholangitis
Research type
Research Database
IRAS ID
356810
Contact name
Samantha Campbell
Contact email
Research summary
ASC database
REC name
South West - Central Bristol Research Ethics Committee
REC reference
25/SW/0112
Date of REC Opinion
10 Oct 2025
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Population base - all patients with Autoimmune sclerosing cholangitis, cared for at KCH, >18 years of age.
Demographics: age, gender, RIP Yes/No, biobank status, liver transplant status, time to transplant from diagnosis, co-morbidities, history of malignancy (HPB/CRC)
2. Staging of liver disease - evidence of cirrhosis or portal hypertension, evidence of decompensation, time to decompensation
3. Immunosuppression history – use of biologics, azathioprine, MMF, 6MP, CNI, prednisolone.
4. Liver biopsy history - number of liver biopsies, dates, indication and findings overtime
a. Changes in histology, by comparing paired biopsies (biopsy at diagnosis, and up-to-date biopsy. Biobanked patients will have their liver biopsies retrospectively reviewed )
5. MRCP history - number of MRCPS, dates, indications and findings and commenting on changes over time.
a. Assessing for evidence of cholangiopathy at diagnosis, by comparing MRCPs from diagnosis, and up-to-date. This will also aid us in assessing for any changes/evolution of disease over time. All available MRCP imaging will be retrospectively reviewed by an independent HPB radiologist, blinded to the original report.
6. Autoantibody history – at diagnosis, most up-to-date, and any changes during disease course (time points of data collection will be yearly)
7. Immunoglobulins – at diagnosis, most up-to-date, and any changes during disease course (time points of data collection will be yearly)
8. Bloods, including haemoglobin, platelets, INR, ALT, AST, ALP, GGT, albumin, bilirubin, sodium, creatinine, urea (time points of data collection will be yearly)
9. ERCP history - number of ERCPs, dates, indications and findings, and commenting on changes over time
10. Presence of IBD and IBD details (diagnosis, year of diagnosis, Montreal classification, biologic use, colonoscopy at diagnosis and up-to-date colonoscopy).Data is already held in our hospital record system (EPIC) , as this is a retrospective study.
Research programme
Due to its complexity and rarity, collaborative research and robust patient databases are essential for advancing understanding, diagnosis, and treatment of patients with autoimmune sclerosing cholangitis. The community supported by the database: Academic institutions and liver research centres - KCL and Institute of Liver studies Charities to be approached for involvement (PSC support, British Liver trust, crohns and colitis UK, for the patients with IBD)
Research database title
ASC database
Establishment organisation
Institute of Liver Studies
Establishment organisation address
King's College Hospital,Institute of Liver Studies
Denmark Hill
SE5 9RS