PSC Quality of Life Study
Researchers from University College London are looking for people with PSC to take part in the second stage of a research study around the impact of PSC on quality of life. This study involves the development of a PSC-specific questionnaire that may be used to measure quality of life in PSC and to improve the evaluation of potential new PSC therapies.
Thank you to all the volunteers who took part in this study. A provisional quality of life measure has now been produced. The next stage is to validate this in the wider PSC community both in the UK and internationally.
Added 23 November 2018, updated 21 May 2021
Marcus E, Stone P, Krooupa AM, Thorburn D, Vivat B. Quality of life in primary sclerosing cholangitis: a systematic review. Health and quality of life outcomes. 2021 Dec;19(1):1-7.
Marcus E, Thorburn D, Stone P, Vivat B. Quality of life (QoL) for people with rare diseases: Recruitment challenges and consequences in a study pilot-testing the UK-PSC-QoL, a provisional QoL tool for people with primary sclerosing cholangitis (PSC) in the UK. 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020). Orphanet J Rare Dis 15, 310 (2020). https://doi.org/10.1186/s13023-020-01550-1
Marcus E. Developing and pre-testing a measure of quality of life for people with primary sclerosing cholangitis (PSC) in the UK (Doctoral dissertation, UCL (University College London)). May 2020.