The UK-PBC Consortium, and the current project, represents the very best opportunity for real progress in the field of PBC research. We know that, in terms of both finance and sheer weight of numbers, it is the biggest study of PBC ever. It is also the most “Joined up” research project, to date, that is looking at PBC: combining the minds and resources of microbiologists, geneticists, immunologists, experts in fibrosis, gastroenterologists and hepatologists from many centres around the UK, to name but a few.
And yet, none of this would be possible without you: the patient. This project was borne out of the genetic research project in Cambridge, and what gave that project such authority was the sheer size of the study. It was by far the biggest study in PBC to that date, and the numbers involved helped not only with the discovery of genetic variants that are important in causing the disease but they also gave the results enormous statistical significance.
We now have a greater understanding of PBC than ever before, including further knowledge of Urso (and more importantly, non-response to urso). For us to push forward with this, and to make important changes in the treatment of PBC, patients must be at the forefront. It is only with active patient involvement, that we can achieve the full potential of this project.
We stand at a portal, with the world entire in front of us. Together, we can dramatically change the world of PBC and effect real change for everyone touched by PBC.
As with all research projects, participants need to be informed, and have a full understanding of what it is they are undertaking. They also need to know that a study is conducted in an ethical way and has the full backing of patient support groups. Certainly, ask questions. It may be that you can take part in one aspect of the study. It may be that you can help the study further down the line, when we are faced with new questions, different questions. It may be that you cannot yet be involved fully. But now is the time to try.
- PBC Foundation
The PBC Foundation (UK) Ltd is a charity offering support and information to PBC sufferers, their families and friends
LIVErNORTH is an adult liver patient support group serving the UK and based at the Freeman Hospital in Newcastle upon Tyne.
- British Liver Trust
The British Liver Trust is the leading liver charity in the UK for all adult liver conditions. The Trust works to pioneer liver health and reduce the impact of liver disease through awareness, care and research.