Why is this survey important?
Without research, there will be no cure for PSC.
People with PSC urgently need an effective treatment. Investigators test treatments that they think might stop or slow down the progression of PSC by carrying out clinical trials (research studies).
Importantly, PSC is a rare disease. This makes it harder to find people who are suitable to take part in research (because we are rare!). Even when suitable people are available, they don't always want to go on a research study. Did you know some studies have to be stopped if they can't find enough volunteers to take part? We don't want that for PSC research.
We would like to identify the reasons why people do, and don't, take part in research so that we can help investigators design studies to better suit patients. For example, many people want to take part, but work full-time, and are not able to miss work. But what if you could have a quiet room to work with wifi? Would that help?
Taking part in research is a big decision and no one should ever make you feel pressured to take part. We are genuinely trying to understand what people with PSC think about taking part in research, and our goal is to improve clinical trial design.
How will the survey results be used?
As with our previous surveys, we will use the anonymised results to represent the needs of PSC patients internationally, and their URGENT need for an effective treatment. Ultimately, we hope that this survey leads to better designed PSC research, enabling more people to take part in future studies. More people taking part might lead us to an effective treatment, quicker.
Who should complete this survey?
This survey is for people who have or think they have PSC, or who have had a transplant for PSC. You should only complete the survey once.
How long will the survey take?
The survey should take you 10 minutes to complete. It is mainly multi-choice questions. Please, please complete the whole survey. Thank you very much 🙂
What's in it for me?
As well as helping us improve research, if you complete the survey, you will have the chance of winning a £50 Amazon voucher! The winner will be selected at random on 15 September 2019 and notified by email.
The information we collect in this survey consists almost entirely of answers to multiple-choice questions, none of which contain personally identifiable data. A small number of questions provide free-text options for written answers. We ask that you do not to use these fields to provide any personal information. We will share the survey results (excluding email addresses if provided) with people involved in clinical trials and research. The anonymised results will be published on our website and through our email bulletins and social medial channels.
Individuals can optionally provide their email address if they wish to be included in the free draw. We will only use your email address for the purposes of randomly selecting and notifying the winner and your email address will not be passed to researchers/healthcare professionals or anyone else outside of PSC Support. You can ask us to remove your email address by contacting us at email@example.com.