What is this about?
With the LITERACY research project, we are developing and evaluating a digital training programme for people with cystinosis and their families. It includes podcasts, explainer videos and live Q&A sessions. Some of the Q&A sessions were recorded and are still available to anyone interested.
With this survey, we would like to find out how helpful you found these resources, whether they met your expectations, what you particularly liked and what we could improve in future. Your feedback helps us to develop the programme further.
How does the survey work?
If you agree to take part, the online survey will begin straight away. It takes about 10 to 15 minutes to complete.
If you find it difficult to take part online, for example because of a visual impairment, please get in touch with us. In that case, we can also offer the survey by telephone.
Is participation voluntary?
Yes. Your participation is voluntary. You can stop the survey at any time without giving a reason, and this will have no disadvantages for you. Because the survey is anonymous, answers cannot be deleted or linked to you once they have been submitted.
Data protection
Your participation is anonymous. We do not collect any data that could be used to identify you personally. If you accidentally include personal details in a free-text field, these will be anonymised before analysis.
The data will be used solely for scientific research purposes, stored securely at the Hamburg University of Applied Sciences and not passed on to third parties. Only staff directly involved in the project have access to the data. The results will only be published in anonymised and aggregated form. In line with legal requirements, the data will be stored for ten years.
Risks and benefits
Based on current knowledge, there are no risks associated with taking part. You will not receive any direct personal or medical benefit from taking part. However, your feedback will help to improve future training resources for people with cystinosis and their families.
Questions?
If you have any questions, you are welcome to contact us at any time: Dr Stefanie Witt (Stefanie.witt@haw-hamburg.de)
Responsible for the study: Prof. Dr Julia Quitmann (Julia.quitmann@haw-hamburg.de)
If you have questions about data protection or would like to make a complaint, you can also contact the Hamburg Commissioner for Data Protection and Freedom of Information. The study has been reviewed by the responsible ethics committee.
Consent
By clicking "I agree", you confirm
- that you have read and understood the information about the study,
- that you are taking part in the survey voluntarily, and
- that you agree to your answers being processed anonymously for research purposes.