The goal of the “SAVE” project is to establish an electronic case file in order to improve communication between the physicians and therapists as well as to collect and evaluate long-term data for future therapy adjustments in a standardized form.

The need for such a case file arose from the fact that until now, the data on these patients could not be collected in a structured and evaluable form across the patient’s doctors.

Cystinosis is a multi-organ disease that requires interdisciplinary care for the patient. For this purpose, the interdisciplinary cystinosis clinic hour was introduced in 2012: Approximately 90 patients are regularly cared for during this consultation. This is one of the largest cohorts of cystinosis patients in unified care worldwide. With an electronic case file, the basis has now been created to efficiently and prospectively record the data on these patients in an evaluable form.

The technical structure was designed in such a way that it can basically be individually adapted to any rare disease by changing the underlying data elements, the forms or other surface contents. The SAVE platform was created based on the OSSE register software and – like OSSE – is an open source system.

The project was particularly funded by the Bavarian Ministry of Health.