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Recruitment challenges and consequences

Developing a quality of life measure in PSC

Quality of Life for People with PSC

Elena Marcus is developing a special questionnaire to measure the quality of life of people with PSC.

Finding Enough Participants

Recruiting enough volunteers to take part in any study is critical for successful research. PSC is rare, so recruitment for studies can be challenging. It's important for people living with a rare disease like PSC to consider taking part in research studies if we are to make progress in finding treatments for PSC.

Prize Poster

Congratulations to Elena for winning 3rd prize for best poster at the conference!

Elena presented her winning poster today at the 2020 European Conference on Rare Disease and Orphan Diseases (ECRD), outlining the recruitment challenges she experienced and the consequences.

Elena aimed to recruit PSC patients across eight groups in the UK, including those with mild or moderate-to-severe PSC, those who also have IBD, those who had had a liver transplant, those with recurrent PSC and those with experience of cancer. She recruited 60 patients altogether and unfortunately, there were not enough patients in some of the categories. This means that some groups were underrepresented in Elena's analysis and she was unable to draw firm conclusions from her data.

Elena has created a provisional quality of life questionnaire that has 66 items (questions) with a separate Stoma Module and Experience of Care Module. She is now developing the questionnaire internationally, and we hope that this will enable her to recruit more people in under-represented groups so that the questionnaire can be finalised and used.

The quality of life measure was initiated by PSC Support and is funded by patients (PSC Support, the British Liver Trust and PSC Partners).