March 2017

Published in ESRS Newsletter March 2017

 

European Narcolepsy Network (EU-NN)

In the past half year the number of members has grown to 32. Presently sleep laboratories and members from 16 European countries are participating in the network.

The board of the EU-NN and the database committee have decided to change the provider and will use Redcap as a new system. The change will take place in April 2017. Members will receive new access codes.

R. Khatami and Z. Zhang from Barmelweid/Switzerland have provided the quality control of the database which presently comprises 1228 validated and 412 non-validated datasets. A new publication about a machine learning approach to differentiate between NT1, NT2 using the database material is in preparation.

The homepage has been updated with the help of our members. We focused on legal issues like driving. We recently added information about new articles on narcolepsy and its related fields. The literature update will be provided every three months. Movies about narcoleptic features will be available for our members, and movies made by European Narcolepsy Groups for publicity purposes will be available for the public. 
Proposals for improvement of the homepage are welcome. The homepage is presently run by Prof. M. Tafti/ the University of Lausanne. As it is presently not possible to change contents for persons who are not members of the university of Lausanne we will probably change the provider within this year. We thank Prof. Tafti for his input and efforts for the maintenance of the homepage.

In collaboration with the European Academy of Neurology and the ESRS, the EU-NN is participating in the preparation of a new European Narcolepsy Guideline. The first meeting has been organized by C. Bassetti and U. Kallweit from Bern, and M. Manconi invited the participants to Lugano. The results of the Lugano meeting will now be submitted to the different organizations for approval.

The 8th European Narcolepsy Day under the motto „Together for better care“ will take place in Palma de Mallorca from March 18 to 19. The programme is available under www.uibcongres.org/narcolepsy2017/ficha.en.html. The European Narcolepsy Day is organized by our member Dr. F. Canellas and the Spanish Narcolepsy Association. We invite everyone interested in the field of narcolepsy and hypersomnolences in Europe and the rest of the world to join us to make this conference a step forward in the care of patients with narcolepsy and hypersomnolences in Europe and worldwide. We are happy to announce that the „Young Scientist Award“ of the EU-NN goes to L. Barateau from Montpellier/France for her work „Comorbidity between central disorders of hypersomnolence and immune-based disorders“.

The Board of EU-NN