Dr Laure Peter-Derex
Dr Benjamin Putois
Pr Stéphanie Mazza (HESPER ; Lyon 1 University), Pr Barbara Charbotel (UMRESTTE ; HCL ; Lyon 1 University), Mme Manon Brigandet (president of ANC association), Pr Patricia Franco (Paediatric Epilepsy, Sleep disorders and Functional Neurology department, HCL ; Waking, CRNL), Pr Benjamin Rolland (Hôpital du Vinatier ; University Lyon 1), Dr Hélène Bastuji (Center for Sleep Medicine and Respiratory Diseases, HCL ; Neuropain, CRNL), Dr François Ricordeau (Center for Sleep Medicine and Respiratory Diseases, HCL) & investigators of reference and competence centers for Narcolepsy and Hypersomnia in France.
Narcolepsy is a chronic, disabling neurological sleep disorder, characterized by excessive daytime sleepiness, symptoms related to REM sleep dysregulation (sleep paralysis, hypnagogic or hypnopompic hallucinations and, in some patients (type 1 narcolepsy) sudden attacks of muscle tone weakness often triggered by emotions (cataplexies). The disease usually begins in childhood or in young adulthood. Narcolepsy symptoms are responsible for major handicaps in everyday life and are often misunderstood by both the family and the professional environment of the patients. Few studies have investigated the impact of narcolepsy on patients’ academic trajectories, socio-professional paths, and quality of life.
NARCOSCOL-NARCOVITAE is a prospective multicentric case-control study designed to establish a comprehensive description of educational and professional paths of narcoleptic patients in France. It is conducted in all National Reference and Competence Centers for Narcolepsy and Hypersomnia. It includes a population of adult and pediatric patients.
Inclusions are ongoing.
- White M, Charbotel B, Fort E, Bastuji H, Franco P, Putois B, Mazza S, Peter-Derex L. Academic and professional paths of narcoleptic patients: the Narcowork study. Sleep Medicine, in press