The member university hospitals of the Medical Informatics Initiative (MII) store and manage their data locally, and retain control, with the assistance of their local use & access committee (UAC), over any decision regarding which research projects their data will be made available for. To ensure scientists do not have to approach each site individually to apply for data use for a new project, a central point of administration for the submission and processing of project applications is needed. Furthermore, a central office is key to providing visibility into all approved MII projects. Against this background, the MII decided to establish a Central Application and Registration Office (ZARS) that accepts project applications, manages projects, and provides scientists with an overview of the status of their MII projects. Additionally, ZARS will offer patients transparency by continuously maintaining a list of all projects that were initiated on the basis of MII’s broad consent.
Achievements to date:
To integrate the so-called German Portal for Medical Research Data (formerly ZARS) into MII’s infrastructure, corresponding processes and interfaces have been prepared.
Technical implementation of the portal is currently being carried out by a company. This involves close cooperation with the MII project ABIDE_MI. In this project, a digital feature is currently being developed that will enable researchers to send fully automated requests for available data to the MII via the German Portal for Medical Research Data. The aim of these requests is to enable researchers to prepare project proposals. This feature will be available online in the near future. Soon after, it should also be possible for researchers to apply for research projects electronically via the portal.
These plans will take into account the needs of future user groups, i.e. scientists, patients and MII member sites that supply the data.
The data sharing working group has developed a high-level plan for the technical and organisational implementation of the German Portal for Medical Research Data, formerly ZARS, which was agreed within the MII and approved by the National Steering Committee.
Download General concept ZARS
version 0.6 (18/01/2019) [PDF | 256 kb]