There is strong interest from PSC patients in taking part in research. The unmet needs of PSC patients and their urgent need for an effective treatment is established thanks to your responses in our past surveys, and PSC Support and other patient groups have communicated this to pharmaceutical companies, regulatory authorities, healthcare professionals and scientists. There is a great deal of interest right now in developing drugs for PSC, and we're working closely with researchers and pharmaceutical companies to help find an effective treatment for PSC. There are a number of clinical trials running and in the pipeline around the world.

The risk of not recruiting

However, PSC is a rare disease and every clinical trial risks being unable to recruit the necessary numbers to demonstrate efficacy of the treatment drug, despite the positive attitudes from patients. If trials don't recruit enough patients, we will never get a cure.

We have seen a demand for clinical trials, but there are a number of barriers preventing or putting off otherwise willing and eligible participants from taking part.

Removing the barriers

However, these barriers can be addressed to make trials more accessible in the future. The PSC Support Patient Insights survey (part 2) identifies motivations for and barriers to taking part in research and makes 15 recommendations on how researchers and pharmaceutical companies can change trial design to maximise recruitment.