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:
Research opportunity in northern California
Narcolepsy Network has been contacted by Jazz Pharmaceuticals Inc., the makers of XYREM® seeking to talk with our members, both those who are currently on XYREM® and those who have never taken XYREM®.
They have engaged the design and innovation company IDEO to conduct in-person interviews with patients in North California (preferably, but not limited to within a 1.5 hour drive from San Francisco) to better understand the needs of people with narcolepsy. If selected, the researchers will arrange a paid in-home interview with you, compensating you $200 for two hours.
Your participation is completely voluntary and does not impact your access to XYREM® nor does it affect your membership in Narcolepsy Network. Your information will be kept private and your identity will only be known to the IDEO research team speaking with you, not to Jazz Pharmaceuticals Inc.
The IDEO team is especially hoping to meet:
- A patient who has a small child
- A patient who does not want to take Xyrem or who is critical of Xyrem
- A patient who has recently started Xyrem
- A patient who has stopped taking Xyrem, preferably in the last year
- A patient who is/was their doctor’s first narcolepsy patient
- A patient who is very active in a narcolepsy community or organization
If you are interested in participating in this paid research, please take an online survey or email research coordinator Ka Yun January 17, 2014. The research interviews will be scheduled for the time between January 20 and February 7 2014.
For more information about your medications, please contact to your healthcare professional.
Narcolepsy Network has not received compensation for this communication from Jazz Pharmaceuticals, Inc., the manufacturer of XYREM®. The confidentiality of your personal information is important to us. No individually identifiable information about you, your medication or your health condition has been or will be shared with Jazz Pharmaceuticals, Inc. or Focused Marketing Research. Your decision to contact Focused Marketing Research is completely voluntary.
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.
Children with narcolepsy wanted in the Boston area for research study on obesity: Help us understand why children with narcolepsy often become overweight.
Research doctors at Boston Children’s Hospital seek children with narcolepsy (4-18 years old) who are not yet on amphetamines or Xyrem. This study involves 1 study visit at Boston Children’s Hospital (4-5 hours). The entire study will take about 1 month to complete. Participants will receive up to $100 as a gift card and will receive parking vouchers. Call Dr. Shaw (study PI) at 617-726-1895 or email her at Natalie.firstname.lastname@example.org for more information.
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: email@example.com
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.
Participants needed for clinical research study
Aerial BioPharma, LLC, is sponsoring a clinical research study evaluating an investigational medication for narcolepsy for men and women ages 18-70. For details about the study and for a list of participating sites, please visit: http://clinicaltrials.gov/ct2/show/NCT01681121
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.
Wake Up to NEW Narcolepsy Research in Georgia
NeuroTrials Research in Atlanta is conducting a new, 12-week research study evaluating the safety and efficacy of an investigational drug for excessive daytime sleepiness in individuals with narcolepsy. All study-related care will be provided at no cost, and qualified participants will be compensated for time and travel. To qualify, you must:
- be 18-65
- have a diagnosis of narcolepsy
- have a typical bedtime before midnight
Call 404-851-9934 or visit www.neurotrials.com for mor 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.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Body Weight Regulation in Patients with Narcolepsy
- Currently recruiting African Americans with narcolepsy for Blood Study. Patients may or may not have cataplexy. Participants will be asked to complete a questionnaire, provide copies of their sleep-related medical records and arrange locally for a blood sample to be sent to the Center for Narcolepsy via prepaid FedEx for HLA typing.
- Currently recruiting persons with narcolepsy for genetic studies and hypocretin measurement studies.
Additional clinical trials may be found on the National Institutes of Health’s clinical trials website.