November 2014

Published in ESRS Newsletter November 2014

 

European Narcolepsy Network (EU-NN)
November 2014

At the 2014 European Narcolepsy Day in Copenhagen a new EU-NN board was elected.

Photos and biosketches of Geert Mayer (president), Gert Jan Lammers (vice president), Rosa Peraita-Adrados (member at large), Renata Riha (secretary) and Markku Partinen (treasurer) can be found on the EU-NN and ESRS homepage. Due to the change in Treasurer, the bank account will be transferred in the near future.  

At a meeting of the Board and Scientific Committee in Schipol on May 23rd, 2014, future studies and publications were discussed.
A session showcasing the Network’s achievements and ongoing protocols was organised for September 17th, in Tallinn. An audience of around 100 people attended the meeting, chaired by Gert Jan Lammers. The main focus of the discussion was on a number of potential new projects. Much of the meeting was spent discussing a (pre)proposal for improving our understanding of the phenotypes of central hypersomnolence and the ‘narcoleptic borderland’. There was animated debate regarding this topic and input from participants will be used to improve the proposal.

The EU-NN 2014 Senior Investigator Grant Award recipients, Fabio Pizza and Gianina Luca, presented the results of studies performed during their stay in the Sleep Laboratory of Yves Dauvilliers in Montpellier.

Markku Partinen who coordinated the Horizon 2020 call on behalf of the EU-NN presented a short summary of the pre-proposal submitted on behalf of the EU-NN: “Understanding common immunological, environmental and OMICAL mechanisms of hypocretin cell loss: beyond narcolepsy” (NarOmi).

The next European Narcolepsy Day will be held 14.-15.03.2015 in Münster, Germany. The focus will be on improving interaction between clinicians, scientists and patient groups who are active in promoting narcolepsy and hypersomnolence of central origin within Europe. The meeting will be hosted by the president of the EU-NN together with the president of the German Narcolepsy Society, Mrs. C. Schitto and Prof. Young from the University of Münster (coordination B. Edge: secretariat-schlaf-muskel-epi@ukmuenster.de). An EU-NN Assembly meeting will be held at this time. The vice-president, Gert-Jan Lammers will step down (as per the bylaws), and two of the current members will require re-election in order to continue as Board members: Rosa Peraita-Adrados and Markku Partinen. At least one new member needs to be elected. The Board calls on all members to consider candidacy for Board membership.
As of Oct 2014, 939 cases of narcolepsy had been included in the EU-NN database, indicating that the major goal for 2014 to acquire 1000 cases will most likely be achieved. Data quality algorithms classify 666 of these 939 as validated cases according to EU-NN predefined standards. All the participating centres have approval from their institutional Ethical Committees. The Child database has been set-up recently and will be accessible in the near future.
As of 14th November, 27 full members in 26 centers in 14 different European countries have joined the EU-NN. Two new applications from Portugal and Germany have been approved.
Narcolepsy Centres throughout Europe are invited to join the EU-NN in the interests of research and improving the clinical management of patients with narcolepsy.  

For more information, including a list of affiliated laboratories, see our website: http://www3.unil.ch/wpmu/eunn/ .

Prof. Geert Mayer
President of the EU-NN