Swiss Narcolepsy bulletin n. 1 | December 2021

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 this newsletter, which is going to be distributed every four months from now on, we have the pleasure to give you insights into topics surrounding the Swiss Narcolepsy Network (SNaNe), mainly about sleep with the focus on narcolepsy and central disorders of hypersomnolence. In addition, we would like to inform you about ongoing research and recent publications in this area as well as about upcoming events.

Enjoy reading it!

What is the SNaNe

The Swiss Narcolepsy Network (SNaNe) is a professional network of researchers and medical doctors, who engage in the research of narcolepsy and other central disorders of hypersomnolence, sometimes called the “Narcolepsy borderland”. The SNaNe was founded by leading Swiss specialists in the area of sleep medicine and narcolepsy, the 20th of January 2017 in Bern, Switzerland. During the General Assembly, the 3th of June 2020, the first SNaNe board was elected, consisting of the current five active members:

• Prof. Dr. med. Claudio Bassetti, Bern, president
• Prof. Dr. med. Ramin Khatami, Barmelweid, vice-president
• PD Dr. med. Philipp Valko, Zurich, Secretary, currently replaced by Dr. sc. nat.  Esther Werth
• Prof. Dr. med Silvia Miano, Lugano
• Dr. med. Elena Wenz, Bern

Activities and Mission of the SNaNe

The goal of the SNaNe is the creation of a stronger collaboration and network between the leading experts on the field of narcolepsy, to improve diagnostic procedures, management and care for patients with narcolepsy and other central disorders of hypersomnolence in Switzerland.
Activities and Mission of the SNaNe:

• Promotion of cooperation between specialists from different disciplines
• Coordination of local networks and referring physicians
• Psychosocial services to support patients and their families (patient information)
• Quality Assurance
• Education (knowledge transfer for professionals and the population)
• Bridge to international organizations such as the European Narcolepsy Network (EUNN)
• Providing support to patients and relatives in their interactions with representatives of the healthcare system

Portrait of SNaNe Board Member

Dr. sc. nat. Esther Werth 

Secretary of the Swiss Narcolepsy Network
Somnologist

Esther Werth is a somnologist at the Department of Neurology, University Hospital Zürich. She is co-director of the clinical sleep laboratory at the department. Esther Werth is a natural scientist, trained in sleep research and holds a PhD from ETH Zürich. She received chronobiological training during her postdoc in Basel and then she extended her sleep expertise by moving into the field of sleep medicine. Esther Werth holds a “Somnologist” qualification of a non-medical academic sleep medicine expert from the Swiss Society of Sleep Research, Sleep Medicine and Chronobiology (SSSSC). Furthermore, she obtained one of the first “Expert Somnologist” certificate of the European Sleep Research Society (ESRS) in 2012. Since then Esther Werth has taken on many clinical tasks at the Sleep Medicine Center of the University Hospital Zurich and leads a small research group. Furthermore, she is a board member of the Sleep & Health Center of Competence of the University of Zürich. One of her research interests is sleep-wake regulation in central hypersomnolence disorders.

Ongoing Research

SPHYNCS

The Swiss Primary Hypersomnolence and Narcolepsy Cohort Study 

The Swiss Primary Hypersomnolence and Narcolepsy Cohort Study (SPHYNCS) is an observational prospective multicenter study, created by members of the SNaNe, and currently conducted at seven Swiss sleep centers. The SPHYNCS 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 including narcolepsy...

Clinical and genetic characteristics of Narcolepsy Type 1, HLA negative patients

In more than 95% of NT1 patients hypocretin-1 (Hcrt-1) levels in cerebrospinal fluid (CSF) are significantly decreased (<110 pg/ml) or undetectable. This is the most sensitive and specific test for diagnosing NT1. A difficult diagnostic challenge is the identification of narcoleptic patients with the unusual association between HLA DQB1*06:02 negative and hypocretin/orexin deficiency, which is reported in less than 2% of cases...

Patient organization

The SNaG is an active patient organization that advocates for the social, professional, and medical concerns of children and adults with narcolepsy or with another form of central hypersomnia.

According to its statutes, the SNaG pursues the following objectives:

• Social, medical counseling and, if possible, financial support for those affected and their relatives.
• Promoting the interpersonal relationships of those affected.
• Informing affected persons and their relatives about progress in diagnosis and treatment.
• Educating the public about narcolepsy.
• Supporting and helping to finance projects for research into narcolepsy and other hypersomnias.
• Cooperation with the authorities, institutions and associations representing the same interests. 
  

Past Events

6^th Swiss Narcolepsy Day

4^th February 2021 | Live from Barmelweid

The 6^th Swiss Narcolepsy Day has been hosted in Barmelweid the 4^th of February 2021 and was a full success with up to 120 participants coming from 27 different countries. The program was varied and included challenging patient cases, the management of narcolepsy at an older age, new research data about the diagnostic delay of narcolepsy and insights into the data management of the Swiss Primary Hypersomnolence and Narcolepsy cohort study (SPHYNCS). Participants also learnt about the Italian Narcolepsy Database and a smartphone application, as possible links for the communication between patients and researchers or medical doctors. The final presentation, in collaboration with the Schweizerische Narkolepsie Gesellschaft (SNaG) and with a guest from the social security service (Sozialversicherung Aargau, SVA, J. Schaller) informed patients and healthcare personal about practical aspects of narcolepsy at work and in case of inability to work. Despite the virtual nature of the event, the speakers received lots of interesting questions from the auditory.

Upcoming Events

7^th Swiss Narcolepsy Day
Lugano | 20^th January 2022

A growing number of normal population suffer severely from daytime sleepiness. In some cases this is caused by narcolepsy – a rare and compromising, still underdiagnosed and not well understood disorder. The 7th Swiss Narcolepsy Day offers opportunities to address clinical aspects of narcolepsy and report on scientific progress in disease mangement.

Together with the newly founded Swiss Narcolepsy Network (www.snane.ch) our goal is to find innovative new strategies that support the improvement of the patient’s medical care.

Online registration open, don't miss the chance, REGISTER NOW!

In-person and Virtual participation available

Did you know?

The onset of narcolepsy is usually in adolescence with a second peak in the fourth decade. Anyway, narcolepsy can rarely occur at older ages, like presented in a recent and interesting case report¹.

Sources:
¹ Kovalská P, Dostálová S, Machová H, Nytrová P, Maurovich Horvat E, Šonka K: Rare Case of Late-Onset Narcolepsy Type 1. Case Rep Neurol 2020;12:428-432. doi: 10.1159/000510633

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