RD-MON - Building a Rare Disease Monitor to Enhance Awareness for Patients with Rare Diseases in Intensive Care.

Rare diseases are commonly defined by an incidence of less than 5/10000 inhabitants. There are some 8000 different rare diseases known. So even if a single rare disease is seldom, together they pose a relevant problem for diagnosis and treatment. This is especially true if a patient is treated for another common disease. University hospital of Gießen is part of the CORD-MI Project on rare diseases within the German Medical Informatics Initiative (MII) and a member of the MIRACUM consortium within the MII. As part of the ongoing Development for a clinical research study monitor within the use case 1 of MIRACUM, the study monitor has been configured to detect patients with rare diseases during their routine clinical encounters. The goal was to send a documentation request to the corresponding patient chart within the patient data management system for extended disease documentation to enhance clinical awareness for the patients' potential problems. The project was started in late 2022 and has so far been successfully tuned to detect patients with Mucoviscidosis and place notifications within the patient chart of the patient data management system (PDMS) on intensive care units.