Zusammenfassung
Establishing a diagnosis in people with a suspected rare disease requires a structured interdisciplinary approach. In some of these cases and in people with an established rare disease but a complex course, expertise from outside the treating center may be helpful or even required to determine the best possible diagnostic or therapeutic plan. To support these processes in a center for rare ...
Zusammenfassung
Establishing a diagnosis in people with a suspected rare disease requires a structured interdisciplinary approach. In some of these cases and in people with an established rare disease but a complex course, expertise from outside the treating center may be helpful or even required to determine the best possible diagnostic or therapeutic plan. To support these processes in a center for rare diseases and the communication between medical experts from different healthcare providers, digital platforms have been developed. The digital platform of the Bavarian working group on rare diseases, BASE-Netz, allows patients, relatives and treating physicians to enter information and upload documents, structures the processes and facilitates communication between the Bavarian centers for rare diseases without restriction to specific diseases or expert groups. The clinical patient management system (CPMS) of the European Reference Networks (ERN) is used for case-related consultations and case conferences typically within 1 of the 24 disease group-specific ERNs. Experts of the respective ERN provide recommendations for a case based on pseudonymized patient data. BASE-Netz and the CPMS have the potential to foster the diagnostic process for rare diseases and improve the treatment of people with such a disease.
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