The UK-PBC Research Cohort is a fundamental part of the UK-PBC Project. Cases in the cohort have a diagnosis of PBC based on established diagnostic criteria (two or more of the following three criteria: cholestatic liver biochemistry, compatible or diagnostic liver histology, and antimitochondrial antibody [AMA] at a titre greater or equal to 1:40). Patients are recruited via the UK-PBC Consortium, a research alliance of more than 150 National Health Service (NHS) Trusts across the UK. Recruitment to the cohort commenced 1st January 2008 and is ongoing.

Detailed clinical information is collected at enrolment into the cohort. The following data are self-reported by the patient and are available for all patients in the cohort:

  • Date of birth;
  • Ethnicity (coded according to the 2001 UK census code);
  • Age at diagnosis (self-reported);
  • Treatment centre;
  • Treatment with UDCA;
  • Liver transplant status;
  • Date of transplant (if applicable).

Since the start of the study, the following clinical data have been routinely collected by review of clinical records in the patient’s treatment centre, and are available for all patients in the cohort:

  • AMA status;
  • At least two sets of LFT, more than six months apart;
  • Liver histology compatible with, or diagnostic of PBC (if applicable).

Since 2010, the following clinical data been routinely collected by review of clinical records in the patient’s treatment centre, and are currently available for 1379 patients:

  • Date of first presentation with PBC (clinician-recorded);
  • Laboratory investigations from the time of presentation with PBC, including liver autoantibodies, serum immunoglobulins, liver biochemistry, renal biochemistry, full blood count and blood clotting;
  • Presence of ascites and size of spleen based on abdominal ultrasound scan at the time of presentation;
  • Use of UDCA; start-date for UDCA (if applicable), and liver biochemistry before and 12 months after starting treatment with UDCA (if applicable).

If you would like to use data from the UK-PBC research cohort, please download the application form.