The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by PBC
The PBC Foundation is an organisation that has facilitated research and continues to do so, when it can. There have been projects we have funded, projects we have supported with resources and projects about which we have informed our membership.
There are many current research projects in the UK, looking at various aspects of PBC, which may be of interest to your patients.
The most successful study we have been involved in to date 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 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 your patients with PBC are interested in this study, they can contact UK-PBC direct on 01223 769088. We would be grateful to you for informing your patients about this study.
Another important study was the PBC 40, conducted in conjunction with the Universities of Liverpool and Newcastle. This study measures quality of life (and the management of) in relation to PBC and its symptoms.
Whilst Ursodeoxycholic Acid is the standard care for those affected by PBC, we know that there is a certain percentage that does not respond to treatment. We are looking at this section of the community in detail: if there are genetic influences, biomechanics, new possible medications, etc., so please check here regularly to keep up to date with developments.
The PBC Foundation is a co-author for a paper titled 'Pretreatment prediction of response to ursodeoxycholic acid
in primary biliary cholangitis: development and validation of the UDCA Response Score', published on the 12th July, 2018. Click on the following link to read this research: https://www.pbcfoundation.org.uk/uploads/tinymce/Carbone_TLGastroHep.pdf
The PBC Foundation has published a research strategy document, which is available to download here: PBC Foundation Research Strategy 2016.pdf