You may be interested to know that Simon Rushbrook at Cambridge has now started the PSC Project which is a UK-wide research study into the genetic causes of PSC. The aim is to collect DNA samples to create a genome database of people with PSC. The supposition is that if PSC is genetic then collection and examination of gene samples may help in identifying the rogue gene(s) and therefore treatments. If you decide to participate in the study you will be asked to provide a sample of either blood or saliva (for extraction of DNA) and to complete a questionnaire. It won't involve extra visits to clinics.

If you are interested in participating in the study you can contact the investigators in Cambridge by telephone (01223 769088) or email (simon.rushbrook@addenbrookes.nhs.uk). They will send a recruitment pack containing further details of the study and either a saliva collection kit (with instructions), or a blood form and blood bottles (with instructions) and a questionnaire.