Update SAVE

May 2019

The Cystinosis Foundation Germany and other partners initiated a telemedical concept to improve therapy management in patients with cystinosis in July 2017.The project was funded by the Bavarian Ministry of Health until December 31, 2018.
As part of the project, an electronic case file was developed to document the patient’s disease status. Structured forms were created for the many specialist groups involved in the treatment, e.g. for nephrology, speech therapy, physiotherapy or nutritional counseling.
The idea: All patient data, i.e. clinical data, blood values, X-ray and ultrasound findings or laboratory values ​​etc. are saved in a file so that other practitioners can also access the data – provided the patient agrees. This optimizes the flow of information between specialized centers and local practitioners. With the patient’s consent, the data should also be exported pseudonymised and e.g. transmitted to international registers and incorporated into research projects. The standardized recording of the data also facilitates a structured transfer of findings during the transition of adolescent patients to adulthood. In this way, treatment data is not lost during the transition from pediatric to adult. The SAVE case file is currently being expanded to include additional functions and should be available to all cystinosis patients in the course of 2019.