Ethics and data protection

THE DATA PROTECTION CONCEPT OF THE RHINELAND STUDY

The protection of data and the privacy of all participants is our top priority. Therefore, it is natural that the data protection provisions of the German Federal Data Protection Act and other applicable legal rules and regulations are complied with and all data is treated confidentially within the framework of the Rhineland Study.

To ensure this, a separate data protection concept for data collection and protection was developed based on the legal regulations and provisions. It has been positively evaluated by the TMF - Technologie- und Methodenplattform für die vernetzte medizinische Forschung e. V. (Technology and Methods Platform for Networked Medical Research). All personal identifying data are stored at an external data trustee (HKF Systems GmbH, Application Service Provider, Siegburger Str. 39b, 53757 Sankt Augustin, Germany). The Rhineland Study is conducted according to the regulations of the Guidelines and Recommendations for Assuring Good Epidemiological Practice (GEP) of the Deutschen Gesellschaft für Epidemiologie e.V. (German Society for Epidemiology e.V.).

ETHICS IN THE RHINELAND STUDY

The Rhineland Study is conducted in accordance with the recommendations of the German Ethics Council. In addition, the Ethics Committee of the University of Bonn has positively reviewed the Rhineland Study.

Rules of Use

The primary goal of the Rhineland Study is to develop preventive strategies to combat neurodegenerative and neuropsychiatric, but also other age-related diseases. With this in mind we identify risk factors, as well as risk groups, which may benefit from targeted measures to delay, or even prevent, an outbreak of a given clinical disease. In addition, the normal physiology of the brain, its variations and changes over the course of life, will be investigated.

The data collection of the Rhineland Study is primarily done with the aim of using it for our own research questions. Other parties may also have access to the data as appropriate, usually in the context of a scientific collaboration. Other options are also possible in individual cases.

Due to the special requirements for the protection of participants' rights and the high scientific value of the existing data and sample material, planned access to the Rhineland Study data must be weighed particularly strictly with regard to the objectives and potentially achievable benefits. The process for this is regulated by this usage regulation.

The complete data and sample material usage policy for the Rhineland Study of the DZNE "Data Use and Access Policy" can be found under the following link:

RULES OF USE