Swiss Narcolepsy bulletin n. 2 | March 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,

We hope that you had a good and healthy start into the new year 2022. It was our great pleasure, to start the year with the Swiss Narcolepsy Day in Lugano on January 20th, which has been a success with more than 100 virtual and in-person participants and speakers. We will tell you more about this event in this Newsletter, including an interview with Dr. Bernasconi (Vice chairman Infections Diseases Dept. Ospedale Civico, Lugano), who gave an interesting talk on COVID-19, the COVID-19 vaccination and Narcolepsy.

Enjoy reading it!

Your SNaNe Board

Portrait of SNaNe Board Member

Prof Dr. Ramin Khatami 

Head, Center of Sleep Medicine and Epileptology - Klinik Barmelweid, Switzerland

Ramin Khatami is a neurologist and head of the Center of Sleep Medicine and Epileptology at Clinic Barmelweid, Switzerland, a large center of sleep medicine running 12 fully equipped inpatient units. Ramin Khatami obtained his MD at Berlin Free University, and was trained in neurology at Dept. of Neurology University Erfurt and Freie Universität Berlin. During his work as head of the EEG lab at Charitè Berlin Humboldt University Germany, he became interested in the interaction of sleep and epilepsy inspired by his daily clinical work with epilepsy patients. He decided to extend his knowledge of sleep physiology and sleep medicine, and applied for a postdoc research grant at the Neurology Department, Zurich University Hospital (Prof. Dr. C. Bassetti) and at the Institute of Pharmacology and Toxicology, section sleep and circadian rhythms (Prof. Dr. A. Borbèly). During his post doc Ramin Khatami studied the mechanism of homeostatic sleep regulation in narcolepsy patients. Since this time Ramin Khatami is fascinated by multiple facets of this complex disease and other disorders of hypersomnolence. In 2008, he obtained his habilitation at the University of Zurich and is currently affiliated as Associate Professor at University of Bern. His vision is to understand the underlying causes of narcolepsy and to provide a meaningful contribution to the treatment of patients with narcolepsy and other disorders of hypersomnolences. Ramin Khatami was one of the founding members of the European Narcolepsy Network (EU-NN) and responsible for launching the international EU-NN database on narcolepsy in 2010. He is now building up a Swiss national narcolepsy database on behalf of SNaNe.

Ongoing Research

SPHYNCS

The Swiss Primary Hypersomnolence and Narcolepsy Cohort Study 

January and February 2022 have been successful months for the «Swiss Primary Hypersomnolence and Narcolepsy Cohort Study» (SPHYNCS) - 18 new participants with Central disorders of hypersomnolence were included all over Switzerland. The prospective cohort study has now 86 participants! We are currently testing and improving the workflows for several subprojects (e.g. proteomics, microbiomics, wearables) and were able to present some preliminary data at the Swiss Narcolepsy Day in January. We warmly thank all the patients and healthy control persons that are contributing with their precious time and effort to the study! We also thank all the scientific, medical and non-medical staff that keep this important study going!

Patient corner

Language: Italian

Past Events - 7^th Swiss Narcolepsy Day

Upcoming Events

SSSSC Schlaf-Kongress
Luzern | 30.03.2022 - 01.04.2022

The next SSSSC (Swiss Society for Sleep Research , Sleep Medicine and Chronobiology) Schlaf-Kongress 2022 will take place from 30^th March to 1^st April 2022 in Luzern.

On this occasion, we are pleased to invite you to join the SNaNe Symposium " Wake Up Narcolepsy and Narcoleptic Borderlands Disorders" on March 30^th 2022 from 11.45 AM to 1.15 PM (CET) in Clubraum 7

We strongly hope to meet you in person. Please forward this invitation to all your colleagues joining the SSSSC Schlaf-Kongress in Luzern

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?

Impact of coronavirus disease (COVID-19) related restrictions on narcolepsy type 1 (NT1): Half of study participants with NT1 (54.1%) reported a decrease or disappearance of cataplexy, possibly as a result of improved sleepiness and reduced social interaction (a primer of cataplexy attacks.

Sources:
Nigam M, Hippolyte A, Dodet P, et al. Sleeping through a pandemic: impact of COVID-19-related restrictions on narcolepsy and idiopathic hypersomnia. J Clin Sleep Med. 2022;18(1):255-263.

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