PSC Support has funded Ryan James' ongoing research to develop a quality of life tool and Alice Freer’s research training fellowship to understand fatigue. PSC Partners Seeking a Cure is also funding exciting work to develop ways to properly capture our experience of certain symptoms (pain, fatigue and brain fog). Many who live with these symptoms know that a simple score out of ten doesn’t really tell the full story.

There’s a lot of research work exploring different dimensions of quality of life and it is important that we’re aligned and collaborating where possible. There are strict regulatory standards to meet and creating multi-cultural tools is expensive.

Three highlights for me were:

• The shared determination to collaborate and keep the momentum of the workshop going.
• It was especially encouraging to see industry openness to considering the use of these tools to measure drug effectiveness (efficacy) in trials. Properly designed tools could be a real game changer, helping to attract more pharmaceutical investment into PSC.
• The importance of patient involvement. I am sure Mark’s presentation touched our researchers and drove a genuine will to work even harder and to collaborate with a new sense of urgency. This workshop was an important step forward and the patient voice is being heard more strongly than ever.

Ultimately, I’d like to see new tools that can assess patient experience used to improve:

• PSC healthcare: justifying much-needed routine psychological support and
• clinical trials by providing a new way to assess the effect of treatments.