Excessive Daytime Sleepiness Interview for People with PWS ages 6-65

Study Purpose

If you are the caregiver and the parent or legal guardian of someone aged 6 to 65 years of age who has been diagnosed with Prader-Willi syndrome (PWS) and who also experiences daytime sleepiness, you and your care recipient may qualify for a 90-minute video interview that will pay you $100 for your participation.

The study sponsor wants to hear about how you and your care recipient experience the symptoms of PWS, including daytime sleepiness. They also want to hear your opinions on questionnaires used to study whether new medicines can help the daytime sleepiness that can happen with PWS. Your experience and that of your care recipient, as well as your feedback, are important. This information may help inform how medicines for daytime sleepiness experienced with PWS are studied in the future.

Eligibility Criteria

In order to participate in this research study:

  • Your care recipient must currently experience daytime sleepiness
  • You and your care recipient must be willing and able to participate together in a 90-minute recorded video interview
  • Your care recipient’s PWS must have been confirmed with a genetic test
  • You must be willing and able to complete a short set of written questionnaires in English
  • If you are your care recipient’s non-parent legal guardian or legally authorized representative, you must be willing and able to provide a copy of documentation verifying that relationship
  • Your care recipient must not currently be taking pitolisant, or have taken pitolisant in the past

To learn more about how to participate in this research study, please contact Erika McClure at 240-632-3000 or erika.mcclure@covance.com.

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