How is patient data being protected?
Niemeyer: Essentially, data is being entered in anonymized form. Only the physician, who enters the data into the system, knows the real name of the patient. Only non-personal case characteristics are being centrally stored. That is to say, the moment the data arrives at the central server of the University of Freiburg’s data processing center, we only identify the patient as a number with disease and therapy-specific characteristics.
What happens if you want to access the real names again? Could you do that?
Niemeyer: If you want to retrace a case number back to a patient, you could do so anytime through the attending physician in the Center, because he or she is the only one, who knows and documents the cartilage identification number and the personal data.
Which registries are still to come?
Niemeyer: We started with the registry for cartilage defects of the knee, because the knee represents the most common site for cartilage defects. In October of 2014, we added modules for the hip and ankle joints, which run for four months. We are also planning a module for the shoulder joint in 2016. Whether more modules will follow is currently not certain yet.
The interview was conducted by Simone Ernst and translated by Elena O'Meara.