Spectrum of Narcolepsy

INVITATION

We are inviting you to participate in a research study involving 4,000 children and adults. Dr. Maurice M. Ohayon from Stanford University is conducting this study.

This study aims to explore the associations between narcolepsy and other sleep disorders. We want to find new ways to help people who have narcolepsy so that they could be better treated. We think that narcolepsy can take different milder forms in family where at least one person has narcolepsy.

If you have narcolepsy OR someone in your family has narcolepsy (even if you have not Narcolepsy), we are asking you to participate in this study.

Your participation in this study is entirely voluntary.

Your decision whether or not to participate will not prejudice you or your medical care. If you decide to participate, you are free to withdraw your consent, including your authorization regarding the use and disclosure of your health information, and to discontinue participation at any time without prejudice to you or effect on your medical care.

AGREEMENT

If you agree to be in this study, the following will happen to you:

• You will have an interview with a research assistant about your sleeping habits, your sleep quality, if you have problems staying awake during the day and other symptoms during your sleep like snoring, difficulty breathing, paralysis upon awakening, etc. The interview will be done by telephone.
• Any data that may be published in scientific journals will not reveal your identity.

This information may benefit future generations of families with narcolepsy although there may be no direct benefit for you.

TIME INVOLVEMENT

There will be no cost to you resulting from your participation in this study.

If you have any questions about this research study, we expect you to ask us by e-mail or by telephone: (650) 494-1137.

Send us an e-mail if you want to participate or have any question:
narcolepsy@sleepeval.com
mohayon@stanford.edu