November 2016

Published in ESRS Newsletter November 2016

 

European Narcolepsy Network (EU-NN)

We are happy to announce the next European Narcolepsy Day to be held in Mallorca from March 18 to19, 2017. The European Narcolepsy Day will be organized by our Dr. Francesca Canellas and the Spanish Narcolepsy Association with the support of the EU-NN board.

Since our last Narcolepsy Day in Helsinki we have been working to improve the EU-NN homepage and to update some of the general information about narcolepsy. With support of K. Sonka/Czech Republic and J. Santamaria/Spain we were able to add a chapter on pregnancy. A chapter on driving and legal aspects by H. Mathis/Switzerland will be added soon.

The funding committee has been nominated with C. Bassetti and T. Kharkevitch who are reaching out for the first support. The most important instrument which needs permanent feeding is the database, which is rapidly growing thanks to the input of data by all participating centers and members. The next publication of EU-NN is about to be submitted by R. Khatami/Switzerland and his colleague Zhang Zhongxing/Switzerland.

C. Bassetti presently coordinates an update of the “Narcolepsy Guidelines” on behalf of the European Academy of Neurology. Financial support is granted by ESRS and EU-NN. The first meeting will be held on 10 February 2017 in Lugano.

Our Erare application “HyperMaz” has passed the first round and we will learn this month if we make the final round. HyperMaz will be a collaborative study on the effects of mazindol extended release on excessive daytime sleepiness and cataplexy. This study is supported by NLS-1 Pharma Switzerland.

Together with INSTAND we will start a European wide quality control on hypocretin-1 in CSF to find out what kind of standard of the assessment we have in Europe.

The Scientific Committee has been quite busy within this year and we decided to start several studies which will use the database. The projects will be under the lead of the initiators. For further information contact geert.mayer@hephata.de.

Board of the EU-NN