••• SAUNA and Patient Participation
“The University Hospital Antwerp (UZA) takes the wishes and feedback of patients very seriously. For the SAUNA study, patients have been involved from the very beginning. Belgian, Dutch, and international patient associations for NETs co-wrote the study’s design and will remain involved throughout the study.”
– Prof. Dr. Marc Peeters
Collaborating with patients in scientific research is crucial for setting up and conducting patient-centric studies. Our patient partners are delegated by their patient associations. They have been involved in the study design and participate in meetings. They reviewed patient information folders, digital questionnaires, and the design of this website. Patients from the Belgian and Dutch patient associations vzw NETMEN Kanker and NETNEC Cancer and on the other hand patients from the patients committee of UZA.
••• Questions About Participation
You can participate in the study if you are being treated at a participating center and meet the eligibility criteria. Contact your treating physician or a research physician at a participating hospital if you are interested in joining this study.
To protect your privacy, all your data will be pseudonymized. This means your name, first name, date of birth, and place of residence will be replaced by a unique code. The key to this code is securely stored at UZA. Only local researchers know which code belongs to you. When processing your data, only this code will be used. Reports and publications about the research will not reveal your identity.
If you consent, UZA (as the data controller) will use your (pseudonymized) data for the purposes of this study and potentially future scientific research. For further analysis of the study data, UZA may also provide your (pseudonymized) data to third parties for additional research in the field of NET. Questions regarding the management of your data can be directed to the UZA Data Protection Officer (dpo@uza.be).
The following individuals have access to your data:
– Persons directly involved in the research: the local study team and data monitors from the Clinical Trial Center of UZA or Erasmus MC Rotterdam (to ensure the research is conducted properly and reliably).
– In case of an audit, representatives of the sponsor, the independent Belgian Ethics Committee, or competent authorities.
Your data will be retained for a period of 25 years.
You have the right to ask the researcher which data is being collected about you in the context of the study and for what purpose. You can request corrections or deletion of certain data, or ask that your data no longer be used.
You can stay updated on the SAUNA study through this website. The study team ensures that it contains the most recent information.
Contact your treating physician or a research physician at a participating hospital if you have any unanswered questions.
