Narcolepsy in Children: From Probands to Family Members

Scope of the Meeting


We plan to answer specific questions within narcolepsy comorbidity and mortality within families with at least one narcoleptic patient.

Narcolepsy is a rare sleep disorder affecting around 0.04% of the general population. Familial reports of narcolepsy have been reported by many investigators suggesting a genetic etiology for the disorder. Narcolepsy, however, is not a simple genetic disease in humans. There are a few family studies that examined the genetic component of narcolepsy.

The risk for a first-degree relative to develop excessive daytime sleepiness or isolated symptoms of abnormal REM sleep such as sleep paralysis or hypnagogic hallucinations is more uncertain. One study found that 4.7% of the first-degree relatives of patients with narcolepsy-cataplexy were excessively sleepy without any other obvious clinical reasons (e.g. obstructive sleep apnea syndrome, psychopathology and period leg movements excluded by questionnaire). This value is remarkably similar to that reported in several other family studies for "narcolepsy-like" symptoms in first-degree relatives. This suggests a possible genetic overlap between narcolepsy with and without cataplexy in these families. It is however difficult to conclude from these studies that genetic factors are surely involved in predisposing to excessive sleepiness in relatives of narcoleptic patients.

The importance of this genetic link, however, is not yet well known; between the full- fledge manifestation of the syndrome and its absence, it may exist sub-syndromes that can be associated with genetic markers of narcolepsy. This genetic link is more likely to appear in families with multiple cases of narcolepsy.


1) To evaluate the family members on narcolepsy symptoms and other sleep disturbances;
2) To evaluate whether families with multiples cases of narcolepsy differ from families with a single patient with narcolepsy.
3) To verify whether environmental factors play a role in the development of narcolepsy among families with narcoleptic patients.


Friday, February 24, 2017

18:30 - 21:00 Welcome dinner
Place: Sushi Tomo
(4131 El Camino Way, Palo Alto, CA)

Saturday, February 25, 2017

09:00 - 09:10 Maurice Ohayon, MD, DSc, PhD
Welcome and Opening Remarks
09:10 - 10:10 Maurice Ohayon, MD, DSc, PhD
Risk factors and mortality of narcolepsy probands and family members
10:10 - 10:20 Discussion
10:20 - 10:50 Break
10:50 - 11:50 Giuseppe Plazzi, MD, PhD
Narcolepsy in Children in Italy
11:50 - 12:00 Discussion
12:00 - 13:15 Lunch
13:15 - 14:15 Yves Dauvilliers, MD, PhD
Narcolepsy in Children in France
14:15 - 14:25 Discussion
14:25 - 14:55 Kyungyeol Bae, MD, PhD
Narcolepsy in Children in South Korea
14:55 - 15:05 Discussion
15:05 - 15:30 Break
15:30 - 16:00 Cristina Milesi, PhD
Summary of the Presentations
16:00 - 16:40 Maurice Ohayon, MD, DSc, PhD
Project Description
16:40 - 17:30 Maurice Ohayon, MD, DSc, PhD
Group Discussion and Next Steps
18:00 - 21:00 Dinner
Place: Dinah Garden
(4261 El Camino Real, Palo Alto, CA)