Data protection--an obstacle for prospective studies? Solutions exemplified by a cohort study

Das Gesundheitswesen
M M Bergmann, Heiner Boeing

Abstract

Prospective studies require the storage of the participants' personal data for follow-up. This demands special precautions for the protection of these data. Additional to the informed consent of the participant which enables the researchers to collect the prospective study data, the participant's right of informal self-determination should be protected. In the EPIC (European Prospective Investigation into Cancer and Nutrition) Potsdam study, therefore, an internal trustee was established that collects follow-up information from participants, physicians, clinics, health offices, tumour and population registries with the aim to obtain valid information on vital status and diseases of the participants. The internal trustee is a spatial and organizational separated working group. The isolated electronic data processing network, the alarm system which controls the rooms of the working group, the access control for employees are special security arrangements. During follow-up the individual identification number of the study data base is replaced by a specific identification number solely for the follow-up. Further, unique identification numbers are allocated to every single action and every single document such as inquiry forms whic...Continue Reading

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