PMID- 36305577 OWN - NLM STAT- MEDLINE DCOM- 20230207 LR - 20240202 IS - 1550-9397 (Electronic) IS - 1550-9389 (Print) IS - 1550-9389 (Linking) VI - 19 IP - 2 DP - 2023 Feb 1 TI - Clinical and neurophysiological characteristics of 89 patients with narcolepsy and cataplexy from the Russian Narcolepsy Network. PG - 355-359 LID - 10.5664/jcsm.10340 [doi] AB - STUDY OBJECTIVES: The first reports of narcolepsy with cataplexy in Russia were made by Mankovsky (The pathogenesis of narcolepsy (the case of epidemic encephalitis with cataplexy) published in the Sovremennaya psihonevrologia) in 1925. The largest series of patients (n = 110) was reported by A. Vein (doctoral thesis: Hypersomnia Syndrome) in 1964. However, until today, narcolepsy remained relatively unknown in Russia. The aim of this study is to report clinical and polysomnography (PSG)/multiple sleep latency test (MSLT) results in the Russian population and compare them with the European Narcolepsy Network (EU-NN) data (n = 1099) reported. METHODS: Eleven sleep centers from Russia agreed to participate and completed a questionnaire including 58 questions concerning demographic, clinical, PSG, and MSLT data. RESULTS: There were 89 patients with a mean age of 35.6 +/- 16.9 years (+/- here and further indicates standard deviation), 58% males, and 42% females. Narcolepsy started at a mean age of 25.6 +/- 14.6 years (range 5-74 years). The mean Epworth Sleepiness Scale score was 18.4 +/- 3.5 points (range: 11-24). Sleep paralysis was reported by 59.1%, and hallucinations by 82% of patients. In MSLT, >/= 2 sleep-onset REM (rapid eye movement) periods (SOREMPs) were found in 81.6%. No center provided human leukocyte antigen (HLA) or cerebral spinal fluid hypocretin data. CONCLUSIONS: Clinical and neurophysiological data from this first study of the Russian Narcolepsy Network suggest a similar profile to the recently reported EU-NN data. The more severe and higher percentage of patients with cataplexy and presenting with both excessive daytime sleepiness and cataplexy may reflect low awareness of narcolepsy in Russia. CLINICAL TRIAL REGISTRATION: Registry: ClinicalTrials.gov; URL: https://clinicaltrials.gov/ct2/show/NCT05375890; Name: Clinical and Neurophysiological Characteristics of Narcolepsy; Identifier: NCT05375890. CITATION: Kuts A, Poluektov M, Zakharov A, et al. Clinical and neurophysiological characteristics of 89 patients with narcolepsy and cataplexy from the Russian Narcolepsy Network. J Clin Sleep Med. 2023;19(2):355-359. CI - (c) 2023 American Academy of Sleep Medicine. FAU - Kuts, Alexander AU - Kuts A AD - Sechenov University, Moscow, Russia. FAU - Poluektov, Michael AU - Poluektov M AD - Sechenov University, Moscow, Russia. FAU - Zakharov, Alexander AU - Zakharov A AD - Department of Neurology and Neurosurgery, Samara State Medical University, Samara, Russia. AD - Samara State Medical University, Research Institute of Neurosciences, Samara, Russia. FAU - Govzman, Vlada AU - Govzman V AD - Clinical Hospital "RZD-Medicine", Khabarovsk, Russia. FAU - Ponomareva, Irina AU - Ponomareva I AD - Regional Clinical Hospital No. 3, Chelyabinsk, Russia. FAU - Yakupov, Eduard AU - Yakupov E AD - Kazan State Medical University, Kazan, Russia. FAU - Zavalko, Irina AU - Zavalko I AD - Research Center of Neurology, Moscow, Russia. FAU - Tikhomirova, Olga AU - Tikhomirova O AD - Nikiforov Russian Center of Emergency and Radiation Medicine, EMERCOM of Russia, Saint-Petersburg, Russia. FAU - Sviryaev, Yurii AU - Sviryaev Y AD - Almazov National Medical Research Centre, Saint-Petersburg, Russia. FAU - Yakovlev, Alexey AU - Yakovlev A AD - Novosibirsk State Medical University, Novosibirsk, Russia. FAU - Polyakov, Alexander AU - Polyakov A AD - V.M. Bekhterev National Research Medical Center for Psychiatry and Neurology, Saint-Petersburg, Russia. FAU - Melnikov, Alexander AU - Melnikov A AD - FSBI NMRCO FMBA Russia, Moscow, Russia. FAU - Bassetti, Claudio L A AU - Bassetti CLA AD - Sechenov University, Moscow, Russia. AD - University Hospital (Inselspital), Bern, Switzerland. LA - eng SI - ClinicalTrials.gov/NCT05375890 PT - Clinical Trial PT - Journal Article PL - United States TA - J Clin Sleep Med JT - Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine JID - 101231977 SB - IM MH - Adolescent MH - Adult MH - Aged MH - Child MH - Child, Preschool MH - Female MH - Humans MH - Male MH - Middle Aged MH - Young Adult MH - *Cataplexy/complications MH - *Disorders of Excessive Somnolence MH - *Narcolepsy/complications/diagnosis MH - Sleep MH - Sleep, REM/physiology PMC - PMC9892735 OTO - NOTNLM OT - MSLT OT - PSG OT - Russia OT - cataplexy OT - excessive daytime sleepiness OT - narcolepsy COIS- All authors have seen and approved the manuscript. Work for this study was performed at Sechenov University, Moscow. The authors report no conflicts of interest. EDAT- 2022/10/29 06:00 MHDA- 2023/02/04 06:00 PMCR- 2024/02/01 CRDT- 2022/10/28 07:52 PHST- 2022/10/29 06:00 [pubmed] PHST- 2023/02/04 06:00 [medline] PHST- 2022/10/28 07:52 [entrez] PHST- 2024/02/01 00:00 [pmc-release] AID - jcsm.10340 [pii] AID - JC2200260 [pii] AID - 10.5664/jcsm.10340 [doi] PST - ppublish SO - J Clin Sleep Med. 2023 Feb 1;19(2):355-359. doi: 10.5664/jcsm.10340.