Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
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.
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Adult Case Group | Adults with type 1 narcolepsy according to the ICSD3 |
| |
| Adult Control Group | Parents, cousins and / or friends of included narcoleptic adult patients, at least 18 years old and not suffering from narcolepsy. |
| |
| Children Case Group | Children with type 1 narcolepsy according to the OCSD3 |
| |
| Children Control Group | Close friends and cousins of included narcoleptic children, minor and not suffering from narcolepsy. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Questionnaire (Adult) | Other | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| For adult : distribution of professional situations | Distribution of professional situations in narcoleptic adult patients and related non-narcoleptic topics (employed, unemployed, student, retired, housewife/husband). (data collection form "professional situation"). | 45 minutes (time to answering the questionnaire) |
| For children : proportion of children who repeated a grade | Proportion of children who repeated a grade in narcoleptic children and non-narcoleptic control children ("school status" data collection form). | 45 minutes (time to answering the questionnaire) |
Not provided
Not provided
Inclusion Criteria:
The case group:
Not provided
Not provided
Not provided
This study will focus on pediatric and adult patients with type 1 narcolepsy and followed up in one of the participating rare disease reference or competence centers.
Two control banks will be constituted:
Not provided
Not provided
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Centre de médecine du Sommeil CHU d'Angers | Angers | 49033 | France | |||
| Service d'Explorations Fonctionnelles du Système Nerveux, Clinique du Sommeil, CHU de Bordeaux Groupe Hospitalier Pellegrin |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 42035556 | Derived | Mazza S, Fort E, Martel N, Ricordeau F, Bastuji H, Arnulf I, Barateau L, Bourgin P, Dauvilliers Y, Debs R, Dodet P, Dudoignon B, Franco P, Hartley S, Lambert I, Lecendreux M, Leclair-Visonneau L, Leger D, Lemesle-Martin M, Leotard A, Leu-Semenescu S, Limousin N, Lopez R, Meslier N, Micoulaud-Franchi JA, Charley-Mocana C, d'Ortho MP, Philip P, Ruppert E, de La Tullaye S, Brigandet M, Charbotel B, Rolland B, Peter-Derex L. The hidden burden of narcolepsy type 1: Discordance in psychobehavioral symptoms between patient self-reports and reports from close family members and friends. Sleep Med. 2026 Aug;144:108969. doi: 10.1016/j.sleep.2026.108969. Epub 2026 Apr 19. | |
| 39943847 |
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Questionnaire (Children) | Other | 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. |
|
| Bordeaux |
| 33076 |
| France |
| Unité de sommeil pédiatrique - Hôpital femme Mère Enfant - Hospices civils de Lyon | Bron | 69677 | France |
| Service de neurophysiologie clinique CHU de Dijon | Dijon | 21 079 | France |
| Service de physiologie et Exploration fonctionnelle - Unité du Sommeil Hôpital Raymond Poincarré | Garches | 92 380 | France |
| Service de Neurophysiologie Clinique, Hôpital Roger Salengro | Lille | 59037 | France |
| Centre de Médecine du Sommeil et des Maladies respiratoires - Centre Hospitalier de la Croix Rousse - Hospices Civils de Lyon | Lyon | 69004 | France |
| Service de neurophysiologie clinique - centre du sommeil - Hôpital de la Timone | Marseille | 13005 | France |
| Service de Neurologie - Troubles du Sommeil Hôpital Gui de Chauliac | Montpellier | 34295 | France |
| Laboratoire d'Explorations Fonctionnelles Neurologiques, CHU de Nantes | Nantes | 44 093 | France |
| Centre du Sommeil et de la vigilance - Centre de référence Hypersomnies rares - Hôpital de l'Hôtel Dieu | Paris | 75 181 | France |
| Service de Physiologie Explorations fonctionnelles Hôpital Bichat Claude Bernard | Paris | 75018 | France |
| Service des pathologies du sommeil Hôpital Pitié-Salpêtrière | Paris | 75651 | France |
| Centre pédiatrique des pathologies du sommeil APHP CHU Robert Debré - Paris | Paris | France |
| Service de Neurophysiologie Clinique et Centre du Sommeil, CHU de Poitiers | Poitiers | 86000 | France |
| Centre des Troubles du Sommeil, Hospices Civils de Strasbourg | Strasbourg | 67 091 | France |
| Explorations Neurophysiologiques, Hôpital Pierre Paul Riquet, CHU Toulouse Purpan | Toulouse | 31059 | France |
| Centre du Sommeil du Service de Neurologie et de Neurophysiologie Clinique - CHRU Bretonneau | Tours | 37044 | France |
| Derived |
| Peter-Derex L, Fort E, Putois B, Martel N, Ricordeau F, Bastuji H, Arnulf I, Barateau L, Bourgin P, Dauvilliers Y, Debs R, Dodet P, Dudoignon B, Franco P, Hartley S, Lambert I, Lecendreux M, Leclair-Visonneau L, Leger D, Lemesle-Martin M, Leotard A, Leu-Semenescu S, Limousin N, Lopez R, Meslier N, Micoulaud-Franchi JA, Charley-Mocana C, d'Ortho MP, Philip P, Ruppert E, de La Tullaye S, Brigandet M, Margier J, Rolland B, Charbotel B, Mazza S. Effort/reward imbalance and comorbidities burden in academic and professional careers of patients with narcolepsy type 1. J Clin Sleep Med. 2025 Jun 1;21(6):983-997. doi: 10.5664/jcsm.11598. |
| ID | Term |
|---|---|
| D009290 | Narcolepsy |
| ID | Term |
|---|---|
| D006970 | Disorders of Excessive Somnolence |
| D020919 | Sleep Disorders, Intrinsic |
| D020920 | Dyssomnias |
| D012893 | Sleep Wake Disorders |
| D009422 | Nervous System Diseases |
| D001523 | Mental Disorders |
Not provided
Not provided
| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |
Not provided
Not provided