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SYNGAP1 Registry
Sunflower syndrome
FOXG1
EURAS

FOXG1

Zusammen mit FOXG1 Deutschland e. V. starten wir aktuell eine Medikamentenumfrage.

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About

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 of participating diseases using Web 3.0 technology.

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

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