Swiss Narcolepsy bulletin n. 7 | June 2024

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 are happy to announce that Sleep-Wake-Epilepsy-Center (SWEZ), Inselspital, Department of Neurology | Center of Sleep Medicine Barmelweid, Klinik Barmelweid | Sleep Unit, Neurocenter of Southern Switzerland have been affiliated as institutional members. 
 
We are happy to announce that the SNaNe General Assembly will be on 22nd August, during the SSSSC/SGSSC annual meeting 2024, on August 22 – 23, 2024. In that occasion new board members will be elected.

We also organized a SNANE symposium during the SSSC/SGSSC annual meeting 2024. 
We are organizing the 15th edition of the European narcolepsy day,  more detail will be available soon on pur webisite www.snane.ch

Last but not least, we warmly invite you to join the next case discussion webinar which will be held on 8th July 2024 from 4:00 to 5:00 PM CET (Join link). 

Enjoy this newsletter, containing an update about the iSPHYNCS study and papers submitted, and last but not least a portrait dr.med PD Haba Rubio, sleep specialist from Lausanne, and an interview from dr.med Kseniia Zub, a young researcher of the Sleep-Wake-Epilepsy-Center, University Hospital Bern.


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

Portrait of SNaNe Members

Dr. José Hab-Rubio

Co-director of the Florimont Sleep Center

Faculty of Biology and Medicine of Lausanne

Co-director of the Florimont Sleep Center, Dr José Haba-Rubio is a neurologist and sleep specialist (Swiss Society of Sleep Medicine and Chronobiology and European Sleep Research Society certificates), Privat-Docent (PD) and Maître d’Enseignement et de Recherche (MER-clin) at the Faculty of Biology and Medicine of Lausanne, and attending physician at the Center for Investigation and Research in Sleep (CIRS) of the CHUV.
After studying medicine in Spain and France, Dr. Haba-Rubio trained in neurology and sleep medicine in Brussels, Strasbourg, and Geneva, before joining the CIRS, where he became a senior physician.
He is co-investigator of the HypnoLaus study, a large-scale epidemiological study conducted in Lausanne, investigating the prevalence and impact of sleep disorders within the general population. He is the author of more than one hundred scientific articles on sleep, covering areas such as movement disorders during sleep, restless legs syndrome, sleep disordered breathing and central hypersomnias (narcolepsy, Kleine-Levin syndrome), and co-author, with Prof. Raphael Heinzer, of "Je rêve de dormir" (ed. Favre), which has been translated into Spanish and Chinese.

Ongoing Research

The iSPHYNCS Recruitments is started, we have recruited from the beginning of SHYNCY 225 subjetc so far. The REDCap iSPHYNCS Database with multilingual support have been implemented. 
Several posters and presentation have been made for the SSSSC/SGSSC annual meeting 2024, for the he 27th Conference of the European Sleep Research Society, in Seville, Spain, in September 2024. 
One papers on the SPHYNCS study have been published in Sleep on digital biomarkers of narcolepsy on the journal Sleep, one papers about the use of Swiss Narcolepsy scale published on the journal Clinical and Transational Neuroscience (CTN), one about the validation of the Turkish Swiss Narcolepsy Scale published on the journal Clinical and Transational Neuroscience (CTN). Furthermore, one papers from the EU-NN group have been published on the journal of Sleep Research, about the pharmacological management of paediatric narcolepsy. Several papers are on preparations, or submitted.

Patient corner

Interview to Kseniia Zub
A young researcher of the Sleep-Wake-Epilepsy-Center, University Hospital Bern

Upcoming Events

SNaNe Clinical Case Discussion
Webinar 18 | 08.07.2024

Join the next SNaNe Clinical Case Discussion on 8th July 2024!

Participation is free of charge and open to public

Don't miss the chance to submit and present your clinical case for the upcoming webinar

2024 Calendar

8th July  |  9th September 

7th October  |  4th November  |  2nd December 

EU-NN Meetings 2024
21st European Narcolepsy Masterclass - 5th July 2024

15th European Narcolepsy Day - 6th July 2024

Venue: 
University of Montpellier, faculty of medicine

Local Organizers:
Prof. Yves Dauvilliers, Dr Lucie Barateau

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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