Register for long-term monitoring of former study participants
Introduction / Presentation
We have developed a central registry to write directly to former study patients and ask for information on their current health status. This shifts the workload for follow-up from the clinics to a central location.
The storage and processing of the participants' address data is carried out by a data trustee who is legally and financially independent of GBG. The data trustee collects the addresses and sends out the letters, but has no access to the participants' medical data. Feedback on the health status is sent directly to GBG's data management in pseudonymized form.
This project was assessed by the Hessian Regional Council in terms of data protection law and given a positive approval by the ethics committee of the LÄK Hessen.
Process
The centers can include patients in this long-term registry at the next follow-up contact. Patients must be informed personally and agree to participate in the registry. After inclusion, patients are contacted annually by the data trustee. Feedback on the health status is sent directly to GBG's data management in pseudonymized form.
Contact
Jan Steffen
