Hypersomnia Foundation


Balance Therapeutics has announced the launch of the first double-blind, placebo-controlled, crossover, multicenter study of a drug (BTD-001) for the treatment of idiopathic hypersomnia (IH) and type 2 narcolepsy (T2N) in adults. More than 20 study sites throughout the United States are currently prescreening or screening people with IH and T2N for enrollment, with some sites already having enrolled participants. Additional sites are on target to begin enrolling participants in the coming months. If you are interested in finding out more about this study, please visit http://www.arisestudies.com/ or click on this link to the study on clinicaltrials.gov (https://clinicaltrials.gov/ct2/show/NCT02512588).



BUNIHPPS – An Online Research Survey for Narcolepsy & IH Patients


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: http://tiny.cc/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 narcolepsystudy@gmail.com 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.


The TONES Study

Excessive sleepiness can catch up with you anywhere.

Adults struggling with Excessive Sleepiness due to Narcolepsy can help evaluate an investigational product.

Doctors are currently conducting the TONES medical research study of an investigational product to treat sleepiness and to help you stay awake. They want to evaluate its effectiveness against excessive sleepiness when it is taken once a day for 12 weeks.

To pre-qualify for the TONES study, you must be:
• Between 18 and 70 years of age
• Diagnosed with narcolepsy
• Sleeping at least 6 hours a night

All study-related visits, tests, and investigational product will be provided to you at no cost. In addition, reimbursement for study-related time and travel may be provided.

To learn more, please contact

Ronna Harris, RMA, CCRC
Clinical Research Manager
NeuroTrials Research Inc.
1100 Johnson Ferry Rd. Ste. 420
Atlanta Georgia 30342
Phone (404)-851-9934
Fax (404)-851-9458

Additional study sites located throughout the United States are also recruiting participants for the TONES study. More information is available at www.tonesstudy.com or at clinical trials.gov.


Research Opportunity

Victoria University, Melbourne Australia is commencing a study about the general health and well-being of people within three groups. One group will be those with both narcolepsy and cataplexy. Cataplexy is a sudden loss of muscle tone, often triggered by emotional arousal. Another group will be people with either narcolepsy-without-cataplexy or idiopathic hypersomnia. The third group will have no disorders of excessive daytime sleepiness. 

This project is part of a PhD by Samantha Gauci (under the supervision of Prof. Dorothy Bruck and Dr. Warwick Hosking). One question is whether the presence of the cataplexy symptom in narcolepsy is associated with a different level of general health and well-being (and some symptoms such as pain and migraines). 

If you would like to participate please go to the following website and follow the instructions for the study “Health and well-being in those with and without a disorder of daytime sleepiness”at www.facebook.com/sleep2015.

Please note: If you would rather complete the paper and pen version of the questionnaire or have any questions, please email Samantha Gauci atSamantha.Gauci@live.vu.edu.au



Additional research studies  may be available at clinicaltrials.gov.

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