Network for Therapy in Rare Epilepsies (NETRE): Lessons From the Past 15 Years.

ABSTRACT: Background: In 2005, Network for Therapy in Rare Epilepsies (NETRE)-was initiated in order to share treatment experiences among clinicians in patients with rare epilepsies. Here we describe the structure of the rapidly growing NETRE and summarize some of the findings of the last 15 years. Methodology/Structure of NETRE: NETRE is organized in distinct groups (currently >270). Starting point is always a patient with a rare epilepsy/ epileptic disorder. This creates a new group, and next, a medical coordinator is appointed. The exchange of experiences is established using a data entry form, which the coordinator sends to colleagues. The primary aim is to exchange experiences (retrospectively, anonymously, MRI results also non-anonymously) of the epile

SUBMITTER: von Stulpnagel C 

PROVIDER: S-EPMC7840830 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature