The Frequency And Treatment Of Excessive Daytime Sleepiness In Patients With Prader Willi Syndrome (PWS)

At Kosair Children’s Hospital Sleep Medicine and Apnea Center and the University of Louisville, we are conducting research projects on the frequency and treatment of excessive daytime sleepiness in patients with Prader Willi Syndrome (PWS).

The first part of the project consists in performing a survey of as many families as possible of children and young adults with PWS using a validated questionnaire. To this effect, the Prader-Willi Syndrome Association (USA) has graciously accepted to mail our questionnaire to all the families with children over the age of 3 years. However, if by any chance you did not receive a questionnaire and are interested in participating in the survey, please feel free to contact the principal investigator, Dr. Leila Kheirandish at (502) 852 5262 or and provide your name and mailing address, so that a questionnaire is mailed to you. After you complete it (feel free to add as many comments to any of the questions as you see appropriate on the back of the sheets), please use the pre-stamped return envelope. We thank you all for your participation. 

If your child is found to have symptoms that suggest the presence of excessive day sleepiness, we will be approaching you and offer you to participate in the 2^nd phase of this research project, in which we will test whether a drug called modafinil provides adequate relief to the excessive daytime sleepiness that may be present in your child. You should know that your child will undergo an overnight sleep study and a daytime special sleep study in the sleep laboratory 3 times over the period of treatment. While the sleep studies and the medication will be free of charge, we will not be able to cover the expenses associated with travel.

If you are interested in participating in this study, please let us know when you return the questionnaire.

Thank you for your participation in this project.
 

Leila Kheirandish, MD, Principal Investigator
David Gozal, MD, Co-Investigator
Jyoti Krishna, MD, Co-Investigator 

Date: 08/19/2008