Within the Medical Informatics Initiative:
CORD_MI: The Medical Informatics Initiative’s (MII) “Collaboration on Rare Diseases” (CORD_MI) aims to improve healthcare and research in the area of rare diseases. To achieve these goals, the technical as well as organizational solutions of the four consortia of the MII (DIFUTURE, HiGHmed, MIRACUM, SMITH) are utilized to share data on a nationwide scale. Further information
Within the Network of University Medicine:
The project "National Research Data Platform" (CODEX) of the Research Network of University Medicine on COVID-19 (NUM) aims to establish a secure and interoperable national data platform for research on SARS-CoV-2 and COVID-19. This will foster research on the current and future pandemics, as scientists from a wide range of disciplines will be able to quickly access a large number of standardized datasets. Further information
In CODEX+ the collaborative research infrastructure CODEX of the Network University Medicine (NUM) will be rolled out more broadly and developed further, with a focus on new data sources, common data models, data anonymisation and convergence with the structures of the Medical Informatics Initiative and further NUM projects. Further information
The NUM-RDP project operates a central platform for the aggregation and use of routine healthcare data in the University Medicine Network. It forms the technical basis for existing and future research projects that want to use the platform or and/or extend it with new software components. It receives, stores and provides data in an interoperable, open format. The Medical Informatics Group supports the project in the area of technical data protection and information security. Further information
Further Projects:
The European Health Data & Evidence Network (EHDEN) aims to answer research questions based on large data sets distributed across Europe while preserving the anonymity of patients. With support from EHDEN, the Charité is building an infrastructure based on the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) and the associated tools of the Observational Health Data Sciences and Informatics (OHDSI) program to make health data accessible for research in a structured form. Further information
The European Joint Programme on Rare Diseases (EJP RD) brings together over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem for research, care and medical innovation in the area of rare diseases. In the project, the BIH Medical Informatics Group works on tools and methods supporting sustainable data sharing with a specific focus on privacy aspects. Further information
The establishment of the German Research Data Centre (Forschungsdatenzentrum; FDZ) at the Federal Institute for Drugs and Medical Devices (Bundesinstitut für Arzneimittel und Medizinprodukte; BfArM) promises to significantly improve the secure use of health data for research purposes in Germany. As part of this process the BIH Medical Informatics Group participates in a project investigating innovative data anonymization and synthetization techniques, with the aim of ensuring the best possible protection of patient privacy. Further information
The Lean European Open Survey on SARS-CoV-2 (LEOSS) is a European non-interventional prospective cohort study on the epidemiology and clinical course of SARS-COV-2 infections. The objective is to further develop evidence-based diagnostic and therapeutic recommendations. Our group contributes to this project by developing and implementing multiple layers of safeguards to support privacy-preserving data sharing. Further information
ORCHESTRA is a large-scale research project aimed at combating the coronavirus pandemic. The aim is to establish an international cohort for conducting retrospective and prospective studies in order to generate rigorous evidence to improve the prevention and treatment of COVID-19 and to be better prepared for future pandemics. Further information
The aim of the THS-MED project is to develop highly scalable open source tools for trust centers in translational medicine. A key focus is on components for patient data management and pseudonymization, both for study personnel and researchers, as well as for programmatic access. Further information
The H2O project brings together more than 23 partners with the aim to improve the quality of care for patients by creating health outcomes observatories that will collect standardised health data in an ethical and a socially responsible way. National observatories will be federated to create a pan-European network for health outcomes data with the purpose of engaging patients and connecting providers, ultimately equipping different stakeholders with the necessary data to improve patient care. Further information