Swiss Narcolepsy bulletin n. 4 | December 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 the Christmas edition of our newsletter, we would like to inform 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 8^th Swiss Narcolepsy Day on 2^nd of February in Basel; don't miss the chance and register now!

Last but not least, in 2023, the SNaNe is going to apply 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 interesting new approaches to the management of narcolepsy (see Ongoing research section) and art work on Narcolepsy by a local artist (see patient’s corner section).
 
Merry Christmas and happy holidays

Enjoy!

Your SNaNe Board

Portrait of SNaNe Board Member

Prof. Dr med Silvia Miano 

Titular Professor, Neurocenter of Southern Switzerland, Faculty of Biomedical Sciences, Università della Svizzera Italiana | Sleep Medicine Unit, Ospedale Civico, Lugano, Switzerland

Silvia Miano is pediatric psychiatrist and Sleep Medicine Expert; she is currently the Head of Clinic at Civic Hospital of Lugano, Neurocenter of the Southern Switzerland Sleep Medici Unit, Lugano. She received her MD degree from La Sapienza University, Rome, in 1997, and she was trained in Developmental Neuropsychiatry in Rome (FMH in paediatric psychiatry). She obtained a PhD in Pediatric Science in 2010. She was enabled as Associate Professor in Developmental Neuropsychiatry, Italian National Concourse, in 2014, and she is Titular Professor at the Faculty of Biomedical Sciences, Università della Svizzera Italiana. She has been invited as a Professor to teach in several national and international courses (i.e European Sleep Research Society). She is Professor of “Master on line en Sueño: Fisiología y Medicina, “Tema 10. Insomnio en la infancia y en el adolescente”. She worked at the Sleep Disease Centre, Paediatric Department, Sant’Andrea Hospital, University of Rome ‘La Sapienza’, Rome, Italy...

Ongoing Research

Group psychotherapy in Narcolepsy type 1 – a pilote study

Dr med Sigrid Von Manitius - Department of Neurology and Psychosomatic Medicine, Kantonspital St. Gallen -St. Gallen, Switzerland
Interview by Dr med Elena Wenz - Department of Neurology, Bern University Hospital - Bern, Switzerland

Patient corner

Living with Narcolepsy - Drawn by the daughter of a patient with Narcolepsy
Copyright ©Tanja Bojanic, All rights reserved

Tanja Bojanic lives and works in Bern. She is currently completing her bachelor's degree in Visual Communication at the Bern University of Arts. The drawings were created during the time of lockdown, when she spent a lot of time with her mother, who has narcolepsy. They respond to the sudden sleep attacks and their irregularity.

Past Events

Wrap up "Sleep Europe" 

Commentary by Dr. sc. nat. Esther Werth - Department of Neurology, Univeristy Hospital Zürich

The biennial congress of the European Sleep Research Society (ESRS) "Sleep Europe" is the leading European congress on sleep medicine and sleep research. Clinicians, researchers, students and trainees come together to learn the latest sleep science news and network with their peers. This year, the congress was held in Athens, Greece, September 27-30, 2022. It was a great experience to be back among colleagues and meet in person after all restrictions of the last two years. There were more than 2000 participants from all over the world.

The topics of narcolepsy and narcolepsy borderline disorders were well present during the congress. There were more than 40 posters on the subject of orexin/hypocretin and central disorders of hypersomnolence and more than 20 oral presentations. There was a joint symposium with EAN on narcolepsy as a disease model for understanding brain sleep-wake regulation and interactions with the immune system, a special symposium on narcolepsy and new insights into mechanism and pathophysiology, and the EuNN session on narcolepsy. Moreover, there was an industry satellite symposium on narcolepsy management in children (Bioprojet). Last but not least, there were two more highlights to report: The poster on "Epigenetic regulation of orexin neurons by miRNAs" and the presentation of the poster by Marie-Laure Possovre was awarded Best Poster Basic. In addition, Jari Gool, an MD-PhD student from the Netherlands, was awarded for his study "Data-driven phenotyping of central disorders of hypersomnolence with unsupervised clustering: towards more reliable diagnostic criteria" in the Early Career Researchers' Symposium, a special platform for the presentation of outstanding work by early career researchers. Moreover, the Daytime Sleepiness Award sponsored by Bioprojet was also awarded to Jari Gool for his ongoing work on "The neural correlates of excessive daytime sleepiness in central hypersomnolence disorders - A multicentre multimodal imaging study".  In summary, it was a very successful congress for the narcolepsy and narcolepsy borderland disorders community.

Upcoming Events

8^th Swiss Narcolepsy Day
Basel | 02.02.2023

Sleep and Breathing Conference
Prague | 20-22.04.2023

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

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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