Read about our involvement in previous research trials, we look forward to sharing more with you in the future as we work towards positive outcomes for people with PBC.
Genetic Study into Primary Biliary Cirrhosis
The most successful studies we have been involved in is the original PBC Genetics Study based in Addenbrookes Hospital in Cambridge. This study used DNA samples from thousands of patients across the UK to help identify the genetic reasons why someone develops PBC.
The PBC Genetics Study was a UK-wide initiative to establish the UKPBC Research Cohort, a cohort of more than 7000 PBC patients for population-level research, including large-scale genetic studies. It has now evolved into a broader study that is called UK-PBC. There are groups around the UK (Newcastle, Birmingham, Cambridge, and Imperial College in London among many) that work together to combat the lack of new treatments for patients.
One of the most successful in funded studies was “PBC 40” project, in conjunction with the University of Newcastle and Liverpool. This produced a 40 questions tool that measures the quality of life of PBC in a scientifically valid way.
The PBC 40 is a widely used tool today, and has been an incredible platform upon which other tools have been built. The recently validated PBC 10 used in our App is derivative of the PBC 40.
Investigation into the Pathogenesis of PBC
Carried out in conjunction with British Liver Trust. These studies have provided a robust way of isolating and maintaining in culture human biliary epithelial cells (the main site of damage in PBC) so that laboratory studies can be carried out to investigate further the relationship between AMA and PBC.
Establishment of PBC Database
This allowed the creation of a national database. As well as allowing the formation of a database that will provide more information about people in the UK with PBC but also showed that doctors can work together effectively.