European Narcolepsy Network

We are very pleased to inform you that the European Narcolepsy Network (EU-NN) has been founded and registered on the 28th of May 2008.

The objectives of the EU-NN are the promotion of European scientific research of narcolepsy and its borderland, and the optimization of medical care for in this field in the broadest sense.

Narcolepsy is a rare but important disorder from scientific as well as clinical points of view. The discovery of a selective loss of hypocretin-producing cells has led to exciting new insights regarding the regulation of sleep, and has opened new research avenues concerning interactions between sleep, metabolism, endocrine function and the autonomic nervous system. It may potentially also shed light on the relation between sleep and the immune system and/or autoimmune mechanisms that can cause brain disorders.

Europe, and the individual European centres, can only achieve a leading position in this field through close collaboration. Experts, clinicians as well as basic researchers, are spread all over Europe. On their own each sees too few patients’populations or may have too limited facilities to perform research with significant impact. Adequate patient numbers, and application of cutting-edge techniques, can only be realized through collaboration. Up to now such collaboration has been hampered by the lack of guidelines for standardised assessment of clinical phenomena, and for standardized procedures to collect and store biosamples.

The EU-NN provides the opportunity to solve these issues and facilitates ‘cross fertilisation’ and synergistic collaboration, which will also increase the chance of funding. The core tools are the available database and biosample bank. Guidelines for the entry of data guarantee its standardisation and quality, and its modular structure enables the collection of prospective data.
Close collaboration is also important from a clinical point of view, as it facilitates the timely and smooth implementation of relevant new findings in patient care.

Membership of the EU-NN is open to all who agree with the objectives of the association and are willing to participate actively which includes contributing patient data and biosamples, according to the defined guidelines. Applications are subject to board review.

Since the goals of the EU-NN are in line with the mission of the ESRS, we hope and expect that our Network may serve as an example for others within the sleep community.

The members of the current board are:

Gert Jan Lammers, president
Claudio Bassetti, vice president
Geert Mayer, secretary
Ramin Khatami, treasurer
Yves Dauvilliers
Mehdi Tafti
Thomas Pollmächer

[Published in ESRS Newsletter June 2009]