FOXG1

Zusammen mit FOXG1 Deutschland e. V. haben wir aktuell eine Medikamentenumfrage durchgeführt.

Erste Ergebnisse finden Sich in dieser Präsentation:

PATRE is a standardized procedure for researching the phenotype and therapies of rare epilepsies based on information directly from the patients and their parents.

The goal is to create a patient-based registry and natural history studies of participating diseases using Web 4.0 technology.

For our electronic parent questionnaires PATRE uses a server with REDCap for secure state of the art data collection.

The project leaders are Kirsten Eschermann and Lorenz Kiwull

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PATRE is a project by the Research Institute for Rehabilitation, Transition and Palliation, PMU Salzburg, Austria. It is the patient-based sister project of NETRE (scientific article on NETRE).

As part of NETRE and the PMU Salzburg, PATRE is a collaborating partner of European reference network ERN EpiCare.

PATRE is partly funded by the European Union participating in EURAS.