Swiss Narcolepsy bulletin n. 5 | June 2023

Message from the Board

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

Dear readers,

With the Summer edition of our newsletter, we would like to remind you about the possibility to apply for a SNaNe institutional membership for your institution on the SNaNe website (find out more about it here: Affiliated Centers – Swiss Narcolepsy Network).
 
We also warmly invite you to join the SNaNe Session and SNaNe General Assembly on 31st August from 12.00 to 13.30, during the the SSSSC/SGSSC annual meeting 2023, on August 31 – Friday, September 1, 2023.

Register now at http://swiss-sleep.ch/ssssc-annual-meeting-2023/

SNaNe has applied for the network being recognized by the KOSEK (national coordination for rare diseases), in order to raise awareness and join forces in the understanding of rare sleep disorders and to optimize treatment and care for affected patients (find more information here kosek - Nationale Koordination Seltene Krankheiten).
 
Enjoy this newsletter, containing an update about the SPHYNCS study (see Ongoing research section) an interview of Prof Alexandre Datta about the last edition of the Swiss Narcolepsy Day (see past events), an interview of Prof Silvia Miano about the paeditriac activities of SNaNe (see patient corner), and last but not least a portrait of the President of SNaNe, Prof. Claudio Bassetti.


Please, also visit our website, where you can find current and old editions of our newsletter. 

Portrait of SNaNe Board Member

Prof. Dr med Claudio Bassetti 

President of the Swiss Narcolepsy Network

Full Professor and Chair, Neurology Department Inselspital, University Hospital

Claudio Lino Alberto Bassetti was born and raised in Ticino, is married and father of three boys. He speaks six languages and enjoys music, history and sports. Bassetti received his MD degree from the University of Basel in 1984. He trained in neurology in Bern and Lausanne and performed research fellowships in experimental neurophysiology (Basel) and sleep (Ann Arbor, USA). In 2000 he was appointed professor of Neurology at the University of Zurich. In 2009 he founded the Neurocenter of Southern Switzerland. Since 2012 he is full professor at the University of Bern and director of the Neurology Department at Inselspital. Bassetti has been working thoughout his career mainly as a general neurologist with a special interest in clinical skills teaching. Using human and animal approaches he pioneered the studies between sleep, sleep disorders and stroke. He also made fundamental contributions to the etiology, pathophysiology and management of human narcolepsy. He authored over 560 publications (H index 105) and 10 books. He served as president of the European Neurological Society, European Sleep Research Society and Swiss Neurological Society (SNS) and European Academy of Neurology (EAN). He has been the founder president of the Swiss Federation of Clinical Neurosocieties (SFCNS). For 8 years he served as board member of the Swiss Academy of Medical Sciences (SAMS). He currently serves as vice-president of the European Brain Council (EBC) and Dean of the Medical Faculty in Bern. He is honorary member of the SNS and EAN.

Ongoing Research

iSPHYNCS is an observational prospective multicenter study, that is currently being conducted at 9 Swiss sleep centers. Three international centers will be joining in the next few months (from Germany, Netherlands and Italy). iSPHYNCS is an innovative study with a broad approach and the goal to collect clinical, electrophysiological, digital, and biological data to investigate the pathophysiology and the course of Central disorders of Hypersomnolence. Using this multidisciplinary approach, the study can contribute to find new disease biomarkers, to reevaluate diagnostic criteria for Central disorders of Hypersomnolence and to improve patient care.
The study population consists of patients between 10 and 70 years, who have been admitted to one of the participating sleep centers for further clinical evaluation, and who have given their informed consent for participation. Eligible patients have symptoms of excessive daytime sleepiness and/or hypersomnolence (sleep duration >11 hours per 24 hours) and a so-called Central disorders of Hypersomnolence is diagnosed or suspected.

For further information, please contact the SPHYNCS team: sphyncs@insel.ch
End of the study: December 2026

Patient corner

Pediatric Narcolepsy - Relevance and related activities in Switzerland

Prof Dr med Silvia Miano - Sleep Medicine Unit, Neurocenter of Southern Switzerland, Ospedale Civico, Lugano (CH)
Interview by Dr med Elena Wenz - Department of Neurology, Bern University Hospital - Bern, Switzerland

Past Events

8^th Swiss Narcolepsy Day | Flashback

Basel, 2nd February 2023

PD Dr med Alexandre Datta
Senior Physician, Head of Neuro- and Developmental Pediatrics a.i., Neurological Head of the sleep laboratory

Upcoming Events

3^rd Sleep Medicine Summer School
Lugano | 10-14.07.2023

This year the Sleep Medicine Summer School will offer an intense scientific program on the topics of chronobiology and circadian disorders, hypersomnia and in particular hypersomnolence in neurological disorders, insomnia and mental health, sleep and psychiatry, sleep and neurologic disorders with a specific focus on epilepsy, movement disorders, parasomnias and disorders of arousals, and sleep related breathing disorders with a specific focus on personalized medicine.

DON'T MISS THE CHANCE!

SSSSC Annual meeting 2023
Geneva | 31.08 - 01.09 2023

During the SGSSC annual meeting will take place also a SNaNe Simposium and the SNaNe General Assembly

Please find here the SNaNe activities agenda:

31^st August 2023

- 12.00 - 13.00 - SNaNe simposium
"Swiss Narcolepsy Network SNaNe – ongoing research in Switzerland"

- 13.00 - 13.30 - SNaNe General Assembly

Swiss Narcolepsy Database - Institutional 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

Did you know?

Did you know that the delay of diagnosis for narcolepsy is still around 10 years in European countries including Switzerland? The main factors predicting a longer diagnostic delay are being a child, a female and a low frequency of cataplexy

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