From digital to reality

For many years, rare diseases have been a research focus of JARA-BRAIN member Prof. Jörg B. Schulz. Now the physician is also involved in the project "Collaboration on Rare Diseases (CORD)", which is funded by the German Federal Ministry of Education and Research with several million euros as part of the Medical Informatics Initiative. The new project offers the opportunity to collaborate across disciplines with numerous partners in this field to improve the quality of life of patients with rare diseases.

The Center for Rare Diseases at RWTH Aachen University Hospital not only improves patient care in the field of rare diseases locally, but also collaborates in many national and international projects to improve conditions. In the CORD project, the university hospital is working with 19 other university hospitals as well as with ACHSE - der Dachverband von und für Menschen mit chronischen seltenen Erkrankungen und deren Angehörige in Deutschland - and other partners to jointly use digital information from diagnostics, therapy and research in compliance with data protection regulations. The joint use of cross-disciplinary methods is intended above all to improve the quality of life of patients with rare diseases.

Data sharing between the different institutions should follow the highest data protection standards and the FAIR principles - Findable, Accessible, Interoperable and Reusable.

Spokesperson of the Aachen Center for Rare Diseases is JARA-BRAIN member and director of the JARA Institute Molecular neuroscience and neuroimaging Prof. Jörg B. Schulz.

Further information about the Center for Rare Diseases at the University Hospital Aachen is available on the website: https://www.ukaachen.de/alle-beitraege-aus-news/news/aus-digital-wird-real-zentrum-fuer-seltene-erkrankungen-aachen-engagiert-sich-in-deutschlandweitem-projekt-an-der-schnittstelle-zwischen-informatik-und-medizin-1/