Welcome, and thank you very much for your interest in our study!
This survey is part of the LITERACY training program, which aims to support people with cystinosis and their families in strengthening their knowledge about the disease, their health literacy, and their ability to manage the condition.
The study consists of two parts:
an initial survey (this survey) and a follow-up survey at a later stage.
The aim is to better understand how helpful and appropriate the provided informational materials and podcasts are for patients and their families.
After completing this survey, you will receive the login details to access the informational materials.
Participation is voluntary and anonymous. All information provided will be treated confidentially and used exclusively for scientific purposes.
The survey takes approximately 10–15 minutes to complete.
We are very grateful that, through your participation, you are making an important contribution to improving care for people with cystinosis.
If you have any questions, please feel free to contact Dr. Stefanie Witt (Stefanie.Witt@haw-hamburg.de).
Thank you very much!