CORD-MI

CORD-MI is a cross-consortia collaborative project involving twenty hospital and ZSE sites and other partners as part of the BMBF's MI initiative. This is carried out in the MII by the action plan of the National Action Alliance for People with Rare Diseases (NAMSE), whose founding members are ACHSE e.V., the BMG, and the BMBF. Each of the university hospitals in CORD-MI operates a center for rare diseases, is a member of one of the four consortia of the Medical Informatics Initiative (MII) (HiGHmed / DIFUTURE / MIRACUM / SMITH), and is advanced in establishing a data integration and competence center according to the rules of the MII. The project is divided into seven work package (WP) subprojects: Study Protocol, Ethics, Privacy (WP1), Documentation Support (WP2), Data Integration (WP3), Data Quality Monitoring (WP4), Data Analysis (WP5), Roll-Out, and Dissemination (WP6) PM/CORD-MI Project Office, Project Coordination (WP7).  

The goal of CORD-MI is to demonstrate consortia collaboration, test MII technical and organizational solutions, and leverage them to improve the visibility of rare diseases,  

• Provide insights into the reality of care,  

• Improve the quality of patient care, and  

• Stimulate research in the field of rare diseases.  

To this end, special concepts and solutions will be developed by the end of the project in 2022 to ensure that the documentation of rare diseases in the university hospitals is improved, the data obtained can be shared and data protection is maintained in nationwide data collection and data evaluation.   

To this end, collaboration related to aggregated "diagnosis-related age pyramids" (e.g., for phenylketonuria), selected "diagnosis time series" (e.g., for PIMS), and "diagnosis coincidences" (e.g., frequencies of birth and maternal cystic fibrosis) will be tested at several sites, initially with test data, which will also be presented using real data starting in fall 2021.