NCT03765892

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

Completed Last updated 18 April 2023

What this trial tests

trial testing Questionnaire (Adult) in Narcolepsy in 1,605 participants. Completed in 27 February 2023.

Timeline

27 February 2020

Primary endpoint
27 February 2023

27 February 2023

Quick facts

Lead sponsor	Hospices Civils de Lyon
Status	Completed
Study type	OBSERVATIONAL
Enrollment	1,605
Start date	27 February 2020
Primary completion	27 February 2023
Estimated completion	27 February 2023
Sites	18 locations across France

Drugs / interventions tested

• Questionnaire (Adult)
• Questionnaire (Children)

Conditions studied

• Narcolepsy — all drugs for Narcolepsy →

Sponsor

Hospices Civils de Lyon — full company profile →

Who can join

6 and older, any sex, with Narcolepsy. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

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.

Publications & conference data

2 peer-reviewed publications reference this trial (live from Europe PMC):

1. Effort/reward imbalance and comorbidities burden in academic and professional careers of patients with narcolepsy type 1.
   Peter-Derex L, Fort E, Putois B, Martel N, et al · · 2025 · cited 2× · PMID 39943847 · DOI 10.5664/jcsm.11598
2. The hidden burden of narcolepsy type 1: Discordance in psychobehavioral symptoms between patient self-reports and reports from close family members and friends.
   Mazza S, Fort E, Martel N, Ricordeau F, et al · · 2026 · PMID 42035556 · DOI 10.1016/j.sleep.2026.108969