A new survey on PSC and diet is available through the European Reference Network (ERN) and open to people living with PSC around the world. Diet and nutrition in PSC is a frequently discussed topic, and adding your voice will help to progress research in this important area! This survey was developed by Catarina Lindqvist (Karolinska Institutet, Sweden) and the ERN’s PSC Working Group.
Because this anonymous survey is not connected to the Registry, it will ask some basic questions about your health. You can access the survey here.
Below is a message from the study investigators:
Dear individuals with PSC,
We invite you to participate in an anonymous questionnaire that aims to further understand the dietary habits of individuals living with Primary Sclerosing Cholangitis (PSC). This research is designed to explore how individuals adapt their diets due to PSC, and if applicable, due to underlying Inflammatory Bowel Disease (IBD). Additionally, we seek to identify the primary sources of information individuals with PSC rely on for dietary advice.
The questionnaire is divided into three sections:
Background information
Questions regarding PSC
Questions regarding IBD (only applicable to individuals with coexisting IBD)
Your participation in this questionnaire is crucial for advancing our understanding of how PSC and IBD influence dietary habits. The insights gained from this study will contribute to developing better support and resources for individuals managing these conditions.
The link to the questionnaire:
The questionnaire is available in English, French, Spanish, Italian, German, Croatian, Hungarian, Czech, Polish and Swedish.
Thank you for taking the time to share your experiences and contribute to this important research. Sincerely,
Catarina Lindqvist, Karolinska Institutet, Sweden and the PSC Working Group
We hope you will participate in this important survey. If you have any questions regarding this study, please contact the team using the Contact Form available in the right menu at the survey link.