Principles and guidelines patient data storage

Hartwig Medical Foundation takes its responsibility to protect the privacy, interests and personal data of participating patients very seriously. Our Privacy Policy has been developed for that purpose.


Hartwig Medical Foundation only gets blood, tumour tissue and treatment data for the database from patients with their knowledge and permission.

Hartwig Medical Foundation receives these data from the supplying hospitals pseudonymised and unidentifiable, so without a name, date of birth or Citizen Service Number (BSN).

The genetic information mapped and analysed cannot be traced back to a person by Hartwig Medical Foundation.

The analysis in a patient report to be used by a treating specialist, is sent back as feedback via a well-protected portal to the hospital which has provided the data. However, the treating specialists and the head researcher of the hospital are able to trace the pseudonymised data back to a patient.

The data stored in the DNA database are also only provided to researchers pseudonymised and untraceable.

For the use of these data researchers sign a licence agreement with strict conditions.

At the patient’s request the data can be removed from the database so that they are no longer available for subsequent research. This is not done retrospectively, so data cannot be removed from any on-going research.

In principle the data are kept for an indefinite period of time. The full privacy policy of Hartwig Medical Foundation can be found here.

Core values for data usage

Hartwig Medical Foundation applies core values on which its choices are based. For the usage of data provided by patients and institutions, these core values have been translated into basic Principles and Guidelines in four different fields (social, ethical, legal and contractual).

General Data Protection Regulation (AVG)

Within the meaning of the General Data Protection Regulation Hartwig Medical Foundation can be qualified as the party responsible for and processing the data. Hartwig Medical Foundation complies with the AVG requirements.

If you have any questions about privacy or data protection please contact our privacy officer via e-mail.

DATA perspective