Dear IH Community members:
A research team at Boston University has developed BUNIHPPS — a survey research study for patients with narcolepsy and idiopathic hypersomnia. Also called the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study, BUNIHPPS is an anonymous online survey forging into new frontiers by asking patients about their experiences with symptoms, the diagnostic process, and their attitudes and behaviors. Dr. William DeBassio, a pediatric neurologist, and Sara Kowalczyk, a doctoral student at Boston University, are the study investigators.
To participate, or to learn more about participating, go to: https://www.hypersomniafoundation.org/research-study/bunihpps/
If this link doesn’t work, try the link on the study’s FB page: www.facebook.com/BUNIHPPS
To take part in BUNIHPPS and answer the survey questions, you:
- Must be aged 18 years or older
- Must have a diagnosis of narcolepsy (any type) or idiopathic hypersomnia
- May have other diseases or medical conditions
- Must be able to read and understand English
- Must have access to a computer connected to the Internet
You can answer the survey questions online and anonymously – no one will be able to track your answers back to you. Even though you might hear about the study in more than one way (for example, on Facebook, from an email sent to you, and through your narcolepsy doctor’s office) please participate one time.
Participation began on October 10, 2015 and will stop as soon as enough participants have completed the survey. Upon completion of the survey study, participants will have the option to enter a raffle drawing for one of eight $25 Amazon gift cards. Results from the study will be published in medical journals and/or shared with patient groups during 2016.
If you have questions about this study, have trouble with the study link, or want a copy of the questions before participating, please email or leave a message for Dr. DeBassio at 617-414-4501 (questions only). Your questions will be answered within two (2) business days. There is also an option to mail in the survey for those who need it.