Dear Members of the PBC Foundation,

Thank you for your interest in our questionnaire.

We would be very grateful if you could fill out the questions below, regarding treating the itch associated with primary biliary cholangitis (formerly primary biliary cirrhosis) with phototherapy (ultraviolet light treatment in a hospital setting). Although this treatment is used in some centres around the UK, we know little about how well it works, how much is needed to get benefit and how long it helps with your itch. This survey is part of a larger effort by Newcastle University to investigate if phototherapy works for itch in PBC and if it does, how. We hope this will lead to improvements in the availability and quality of phototherapy treatment in the UK as well as develop new treatments based of an improved understanding of how phototherapy works.

Your participation is completely voluntary can be complete at any time that is convenient for you. Depending on your answers, there is a maximum of 11 questions and should take about 5 minutes to complete. You can withdraw at any time and request to delete your data up until the data is analysed by emailing us. We do not ask for any identifiable details and do not use cookies. This means your data will be completely anonymous. We hope to publish the results of this survey in a publicly available journal. As well as group-level data, this may contain quotes from individual respondents (anonymous, of course).

If you have any questions or comments about the questionnaire, please email
Robert.Samuel@newcastle.ac.uk

Thank you,

Dr Robert Samuel
Academic Foundation Trainee
Newcastle University and Newcastle Upon Tyne Hospitals Trusts

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