The PBC Foundation is the only UK based organisation that specifically deals with PBC.
The Foundation is very proud of its record in funding and facilitating research into PBC. It has singularly funded a number of projects as well as started the ball rolling on others.
One of the most successful research studies we funded was the “PBC 40” project, in conjunction with the Universities of Newcastle and Liverpool. This produced a 40 question tool that measures quality of life in PBC in a scientifically valid way.
We were also fortunate enough to be bequeathed a sum of money which was to be used to fund a PBC research project. That project is now in progress at the Norwich and Norfolk University Hospital and is looking at what happens to bile duct cells when they become inflamed and injured, such as occurs in PBC.
The most successful study we have been involved in is the original PBC Genetics Study based in Addenbrookes Hospital in Cambridge. This study used the DNA samples from thousands of patients across the UK to help identify the genetic reasons why someone develops PBC. The success of this study led on to a broader study which is called UK-PBC (www.uk-pbc.com). This involves groups across the UK (Newcastle, Birmingham, Cambridge, and Imperial College, London amongst many) working together to tackle the lack of new treatments for patients. Within this study patient involvement is key, and includes opportunities to continue the genetics collection, studies on why Urso doesn’t work for everyone, and most importantly in many ways, opportunities to take part in new trials of drugs for PBC (including symptoms). Everyone who took part in the original genetics study will be notified about this, and new patients are encouraged to join if they haven’t already been invited by their doctors to do so. Patients can ask their own clinician about this, or contact UK-PBC direct (01223 769088).
The PBC Foundation has also been involved in educating not just patients but clinicians as well. One such example from 2014 is a conference where clinicians learning about autoimmune liver diseases heard from patients and not just clinician experts.
The exciting thing about research is how it spans so much, and how anyone can take part, be that answering some questions about your symptoms, all the way up to trying new medicines if appropriate.