November 2013 – European Narcolepsy Network (EU-NN)

European Narcolepsy Network (EU-NN)

Summary of highlights

• We expect the next EU-NN publication about the DQB1 locus explaining most of the risk and protection in narcolepsy with cataplexy in Europe, in the January issue of Sleep.
• The preparations for the 5th European Narcolepsy Day are up and running. Poul Jennum will be the host and the meeting will take place in Copenhagen on March 15 & 16, 2014.
• A call for grants to facilitate exchanges between EU-NN laboratories for young scientists and senior investigators have been announced in our website.
• We can offer support to help larger centres to enter the backload of prospective cases in the prospective database.
• Implementation of a childhood module is scheduled for the first quarter of 2014.

EU-NN membership

Since 2012 the number of EU-NN members has steadily increased. In 2013 seven new applicants applied for membership and were accepted as full members after approval by the EU-NN board. In particular, we welcome Poland, Portugal, and Slovenia to the EU-NN community. As of 1st November 2013, 27 full members of 22 centres from 14 different European countries join the EU-NN.

Current status of the EU-NN database

More than 300 new cases have been entered in the EU-NN database in 2012/2013.   Thus, by the end of Oct 2013 a total of 513 cases are included in the database. Data quality algorithms classify 317 of these 513 as validated cases according to EU-NN predefined standards. These data qualify for further prospective studies. This impressive number demonstrates the potential of the database as a resource for future EU-NN studies. We thank the contributing centers for their effort.
As a major action for 2014, the EU-NN tries to acquire 1000 validated cases. To achieve this goal the EU-NN board will offer support for major contributing centers, to enter the backload of prospective cases. A second action will be to encourage centers to enter follow-up data. So far 97 follow-ups have been documented. Only regular follow-ups will help us to establish the first prospective narcolepsy database worldwide.

We are pleased to announce the implementation of a special childhood database module in the first quarter of 2014. Database structure resembles that of adult database but additional fields will cover specific aspects of childhood narcolepsy.

5th European Narcolepsy Day

The preparations for the 5th European Narcolepsy Day are up and running. Poul Jennum will be the host and the meeting will take place in Copenhagen on March 15 & 16, 2014. The final announcement including the scientific programme with exciting news and updates, and the call to apply for the young investigators award will be sent out soon. The annual assembly will immediately follow the scientific programme on the 15th and the day will be finished with a dinner.

Although autumn has started in Europe, the EU-NN is entering spring!

Gert Jan Lammers, President of the EU-NN

For any questions please don’t hesitate to contact us.
European Narcolepsy Network (EU-NN), Rudolf Bultmann Strasse 8, 35039 Marburg Germany
www.narcolepsy-network.eu/