Great strides have been made in recent years in understanding the cause(s) of narcolepsy, but much work remains to be done. Your participation in research studies will help researchers to unravel the mysteries that remain.
Research projects currently seeking participants:
BUNIHPPS – An Online Survey Study for Narcolepsy and Idiopathic Hypersomnia
Researchers at Boston University are looking for adults with narcolepsy and idiopathic hypersomnia to participate in an online survey research study about their experiences with symptoms and diagnosis, as well as their attitudes and behavior.
Study Researchers: Dr. William DeBassio (principal investigator) and Sara Kowalczyk
To take part in the study, 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 now. Even though you might hear about the study in more than one way (for example, on Facebook, from an email sent to you, and on a website) please answer the survey questions only one time. Upon completion of the survey study, participants will have the option to enter a raffle drawing for one of eight $25 Amazon gift cards. You can also see what others are saying on the study’s Facebook page: www.facebook.com/BUNIHPPS
Study participation began on October 10, 2015 and will extend into January 2016 at the latest. If you have questions about the study or want to see the questions before participating, please contact firstname.lastname@example.org or leave a message for Dr. DeBassio at 617-414-4501. Your questions will be answered within two (2) business days.
Research Study is Enrolling to Evaluate Medications for Excessive Daytime Sleepiness
A voluntary research study is enrolling to evaluate medications for individuals diagnosed with Sleep Apnea or Narcolepsy. Participants must experience excessive daytime sleepiness to qualify. Five site visits will be required, weekend visits can be arranged. Qualified participants will receive up to $1700 for time and travel.
Visit www.prnsd.com or call us at 619-294-4302 to find out more and to see if you qualify.
Australian Research Opportunity
Victoria University, Melbourne Australia is commencing a study about the general health and wellbeing 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 wellbeing (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 wellbeing in those with and without a disorder of daytime sleepiness”
Samantha Gauci can be reached at Samantha.Gauci@live.vu.edu.au. sleepiness. Participation for this study ends on December 1, 2015.
Please note: If you would rather complete the paper and pen version of the questionnaire or have any questions, please email or call Samantha Gauci.
Nexus Narcolepsy Registry
The Nexus Narcolepsy Registry is a collaboration of patient advocacy organizations including NN, leading narcolepsy researchers, and industry. Its goal is to track a large number of people with narcolepsy (PWNs) over several years. PWNs who volunteer to participate will complete a series of questionnaires about themselves at regular intervals. Anonymous data from the surveys will help researchers learn more about the experiences of PWNs, how narcolepsy affects their lives, and how the condition changes over time. Find more information and participate in this important research program by visiting the registry website.
Express Medical Research Study For Pediatric Patients
Researchers are currently conducting the EXPRESS medical research study of an investigational medication called Xyrem. They want to evaluate the safety and effectiveness of this medication in the treatment of children who have narcolepsy with cataplexy. To learn more about the study and find a study location near you, visit the Express Study website. Even if your child is already taking medication for narcolepsy, he or she may be eligible for this study.
The Express Medical Research Study For Pediatric Patients With Narcolepsy/Cataplexy in California
Researchers in Oceanside and Orange, California, are looking for children with narcolepsy with cataplexy to participate in a research study. The study will assess the effectiveness and safety of sodium oxybate (Xyrem) in treating cataplexy and EDS in children ages 7-17.
Qualified participants must:
- Be children and adolescents who are diagnosed with narcolepsy with cataplexy
- Be currently treated with Xyrem or Xyrem naïve, with or without concomitant stable stimulant use.
Participants will receive reimbursement, including travel expenses, for taking part in this research study.
For more information see the Study flyer or contact the study locations:
Oceanside, CA 92054
Children with narcolepsy wanted for research study on obesity.
Help us study why children with narcolepsy often become overweight. Research doctors at Boston Children’s Hospital seek children with narcolepsy (4-18 years old). This study involves 1 visit at Boston Children’s Hospital (4-5 hours). The study will take 1 week to complete. Participants will receive up to a $100 gift card and parking vouchers. Call Dr. Shaw (study PI) at 617-726-1895 for more information.
Pediatric Narcolepsy Study in Texas
Do you have a child between 7-17 years old, diagnosed with narcolepsy and had a recent experience of cataplexy attack (within the last 2 months) and had a recent experience of excessive daytime sleepiness (within the last 2 months)? Are you and your child willing to travel to Houston and participate in a 60 minute face-to-face interview? If qualified to participate, you will receive a $100.00 VISA or Amex gift card and your child will receive a $50.00 VISA or Amex gift card.
Please call 713.465.7066 or email email@example.com for more information and to schedule today.
San Diego Narcolepsy Research Study
Pacific Research Network is testing a compound (vs. placebo) for excessive daytime sleepiness in those that have narcolepsy. This is a 3-month study that requires 3 overnight stays followed by daytime testing. (3 overnights spread-out over the length of the study and can take place on weekends). Missing work and committing to the study may be hard, but your participation is appreciated. Qualified participants will receive up to $2450 for their time and travel. Eligible volunteers are diagnosed with narcolepsy and between the ages of 18 and 70. Call for more information and to see if you might qualify. Pacific Research Network: (619) 294-4302 * www.prnsd.com
Washington, DC research study
Have you been diagnosed with narcolepsy and are between the ages of 18 and 70? A new research study is enrolling to test an investigational medicine for excessive daytime sleepiness associated with narcolepsy. Qualified participants will receive study-related care at no cost and will be compensated for time and travel. For more information contact:
The Center for Sleep & Wake Disorders Chevy Chase, Maryland/Friendship Heights Metro
Phone: 301-654-5665; Email: firstname.lastname@example.org
Arizona research study
Have you been diagnosed with narcolepsy? Are you between the ages of 18 and 65? A new research study is enrolling participants to test an investigational medicine for excessive daytime sleepiness associated with narcolepsy. Qualified participants will receive study-related care at no cost and will be compensated for time and travel. For more information call 602-346-4747.
Researching Options in Pediatric Narcolepsy
NeuroTrials Research is conducting a new research study for excessive daytime sleepiness for children and teens with narcolepsy. Qualified participants will be compensated for time and travel. Your child may qualify if he/she:
- is 6-17 years of age
- has a diagnosis of narcolepsy
- is otherwise in good health
- suffers from excessive sleepiness associated with narcolepsy
- has a parent or legal guardian available to attend all study visits
Call 404-851-9934 or visit neurotrials.com for more information.
Pediatric research study looking for children in the following states:
- New Mexico
Todd J. Swick, M.D. is conducting a new research study for excessive daytime sleepiness for children and teens with narcolepsy. Qualified participants will be compensated for time & travel. Your child may qualify if he/she:
- Is 6-17 years of age
- Has a diagnosis of narcolepsy
- Suffers from excessive sleepiness associated with pediatric narcolepsy
- Is otherwise in good health
- Has a parent or legal guardian available to attend all study visits
Please call 713.465.7066 for more information.
For more information on current clinical trials visit the National Institutes of Health’s clinical trials website.