The Global PBC Study Group was founded in 2012. It is an international non-profit collaboration between medical centers conducting research in Primary Biliary Cholangitis (PBC). The incentive to establish this collaboration was the search for reliable surrogate endpoints in this slowly progressive disease. In order to do so, individual patient data of long-term follow-up cohorts were combined in a large database, currently comprising data of more than 6,000 patients. This database was also used to study other aspects of the disease, such as incidence and risk factors for hepatocellular carcinoma, and the construction of a new prognostic tool, the GLOBE score.
The Study Group has a semi-fixed character and the number of centers contributing to a particular project may vary. There is a steering committee, standard operating procedures for new projects and the Group meets at least bi-annually.