Involved are the Cooperating Top Clinical Training Hospitals (STZ), the Dutch Federation of University Clinics (NFU), the Association of Innovative Medicines, the Foundation Netherlands Cancer Institute – Antoni van Leeuwenhoek Hospital (NKI/AvL) and the Association of Contract Research Organisations in the Netherlands (ACRON). The survey conducted within the BigData@Heart consortium revealed a total of 56 participating data sets on 28 PIs from 13 different institutes, organisations or companies. The PIs were identified and contacted to retrieve documents. Out of 28 PIs we sent by email and/or phone, 20 (71%) responded to a total of 31/56 (55%). Eight data sets were removed from the list because they did not contribute to BigData@Heart patient-level data. In order to promote a responsible exchange of data in the field of health research, it is necessary to put in place ethical governance that complements the EU General Data Protection Regulation. . . .