Swiss Narcolepsy bulletin n. 3 | August 2022

Message from the Board

Prof. Dr. C Bassetti; Prof. Dr. R Khatami; Dr. E Werth; Prof. Dr. S Miano; Dr. E Wenz; 

Dear reader,

With this summer edition of our newsletter, we would like to give you more insights into current research questions in the field of Narcolepsy and its borderland. You will read about a European study, that used a machine learning approach to analyse the database of the “European Narcolepsy Network” and about an interesting case of Narcolepsy combined with Central sleep apnea. You’ll also find links to upcoming events in the field of sleep medicine and to the new website of the Swiss Narcolepsy patient’s organization “SNaG”.
Please, also visit our website, where you can find current and old editions of our newsletter. 

Enjoy!

Your SNaNe Board

Portrait of SNaNe Board Member

Dr. med Elena Wenz 

Department of Neurology - Bern University Hospital, Switzerland

Elena Wenz is a resident at the Department for Neurology at the University Hospital in Bern and a MD-PhD student at the Graduate School for Health Sciences at the University of Bern. She joined the Bernese sleep research group in 2019 and has been significantly involved in the setup of the “Swiss Primary Hypersomnolence and Narcolepsy Cohort Study” (SPHYNCS).  Her research focuses on the identification of new biomarkers in the blood and cerebrospinal fluid, on optimizing diagnostic procedures (e.g. hypocretin measurements) and care for patients with central disorders of hypersomnolence

Ongoing Research

Clustering of Central disorders of hypersomnolence

Commentary by Prof. Dr. Ramin Khatami - Head, Center of Sleep Medicine and Epileptology - Klinik Barmelweid, Switzerland

Narcolepsy Typ1 (NT1) is one of the best-known and a well characterized entity within the group of Central disorders of hypersomnolence (CDH).

But how many types of central hypersomnolence disorders exist?

and

How do they differ in clinical presentation?

In the largest study to date on CDH, Swiss researchers from the SNaNe (Zhongxing Zhang and Ramin Khatami) in cooperation with a Dutch research group (Jari Gool and Gert Jan Lammers) pursued these questions...

Patient corner

Have a look at the new website of the SNaG (Schweizerische Narkolepsiegesellschaft / Société Suisse de Narcolepsie / Società Svizzera de Narcolessia) to learn more about the Swiss Narcolepsy patient organization.

Upcoming Events

European Biological Rhythms Society Congress 2022
Zürich | 24-28.07.2022

26^th Conference Of The European Sleep Research Society
Athens | 27-30.09.2022

30. Jahrestagung Der Deutschen Gesellschaft Für Schlafforschung Und Schlafmedizin (DGSM) E. V.

Wiesbaden | 10-12.11.2022

26^th Berner Schlaf-Wach-Epilepsie Tage 2022
Bern | 02.11.2022

19^th European Narcolepsy Masterclass

Bologna | 18.11.2022

13^th European Narcolepsy Days
Bologna | 19-20.11.2022

Swiss Narcolepsy Database - Insitutional Membership of the SNaNe

The SNaNe plans to launch a national Swiss database on narcolepsy. The basic idea is to run a scientific database and prospectively collect data on narcolepsy and related disorders of hypersomnolences. The SNaNe database is designed as a long-term project to integrate clinical and preclinical data, including sleep studies and biosamples (blood and cerebrospinal fluid) at inclusion and at regular follow-up visits. The SNaNe database is implemented as a web-application using the Redcap data platform. The SNaNe invites Swiss sleep centers who are experienced with clinical care of narcolepsy and other patients with hypersomnolences to join the database as institutional member. The institutional members must follow Good Clinical Practice “GCP-guidelines”.

Institutions Login information will be provided upon application for institutional members.

Only SNaNe institutional members will have access to data of their own study site

Case Report

We describe a 22 years old caucasian male who received 7 years ago a diagnosis of Narcolepsy type 1 (NT1) in our Sleep Medicine unit in Lugano, corroborated by undetectable CSF orexin levels, positive HLA DQB1*0602 allele, and generalized cataplexy...

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