NCT03765892

Study of the Academic and Professional Course of Narcoleptic Patients (NARCOSCOL-NARCOVITAE)

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 1,605 (actual)
• Sponsor: Hospices Civils de Lyon · Academic / Other
• Sex: All
• Age: 6 Years
• Healthy volunteers: Accepted

Summary

Narcolepsy is a chronic, disabling, and rare sleep disorder (prevalence 1/2500) characterized by excessive daytime sleepiness and, in some patients, falls in muscle tone related to emotions (cataplexies). It often begins in childhood or in young adults. Symptoms of narcolepsy are responsible for an important handicap in everyday life, and are often misunderstood by the family and professional environment. In addition, many comorbidities are associated with narcolepsy, such as depression, anxiety, or obesity. Few studies have investigated the impact of narcolepsy on patients' academic background, socio-professional integration, and quality of life. Narcoleptic patients may experience more difficulties in their academic and professional path than non-narcoleptic people. These difficulties would be multifactorial (related to the disease itself, comorbidities, external factors ...). As a better understanding of these determinants could help to inform patients and guide them in their choices, this study propose to establish a comprehensive inventory of educational and professional trajectories of narcoleptic patients in France in order assess the specificity of the difficulties encountered by the people concerned in their life course and to appreciate the attitude of the academic and professional circle with respect to the disease. This category 3 study (according to the French law "Loi Jardé") is based on the case-control model and will be conducted in all National Reference and Competence Centers for Narcolepsy and Hypersomnia. It will include a population of adult and paediatric patients. It will answer questions about work and schooling in these patients.

Conditions

• Narcolepsy

Interventions

Type	Name	Description
OTHER	Questionnaire (Adult)	Patients and case control will have to respond to the study questionnaire on the online entry platform to compare the distribution of socio-professional categories. Answering the questionnaires will take 45 minutes.
OTHER	Questionnaire (Children)	Patients and case control will have to respond to the study questionnaire on the online entry platform to compare the proportion of subjects having repeated grades. Answering the questionnaires will take 45 minutes.

Timeline

• Start date: 2020-02-27
• Primary completion: 2023-02-27
• Completion: 2023-02-27
• First posted: 2018-12-05
• Last updated: 2023-04-18

Locations

18 sites across 1 country: France