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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.

Survey for Adults Living with a Rare Disease in the US

The survey will help inform public discussions about rare diseases and will raise awareness of the challenges associated with rare conditions.

All adults in the US age 18 or older who have been diagnosed with a rare disease or who are undiagnosed are invited to take part in the survey to share their thoughts and experiences. The survey is anonymous and only takes about 20 minutes to complete. The survey can be found on this website.

REST-ON Clinical Trial

The REST-ON (Randomized study Evaluating the efficacy and SafeTy of a Once Nightly formulation of sodium oxybate) clinical trial is studying an investigational medication as a potential option to treat narcolepsy. If you have narcolepsy with cataplexy, you may be eligible to participate in this trial.

Sodium oxybate has been approved as a prescription medication to treat the symptoms of narcolepsy, such as excessive daytime sleepiness (EDS) and sudden muscle weakness (cataplexy). This trial is assessing whether a different form of sodium oxybate, an extended-release version (FT218), may be effective as a potential once-nightly treatment for EDS and cataplexy. The trial is sponsored by Avadel Pharmaceuticals, a small company dedicated to advancing treatment options for people living with narcolepsy.

Why Enroll in the REST-ON Clinical Trial?

  • Participating in the REST-ON clinical trial will give you the unique opportunity to help yourself and others with narcolepsy by contributing to the development of a new potential treatment option.
  • You’ll have a chance to participate in the drug-development process firsthand and play a significant role in the evaluation of a potential new treatment.
  • You will be under the care of a specialty medical team at no cost to you or your insurance and your trial-related expenses will be covered.
  • You may also be eligible to receive compensation for your time and travel.
  • Through careful monitoring and daily symptom tracking, you’ll also be empowered with knowledge about your condition and may learn more about how to manage your narcolepsy.

Ready to Take the Next Step?
Visit the REST-ON website to learn more about the trial and find out if you’re eligible. You can also locate a trial site near you and download a flyer that can be helpful for talking to your doctor about the trial. 

A new narcolepsy treatment option could be on the horizon, and you have the opportunity to help make it a reality!

Clinical Trial for the Treatment of Excessive Daytime Sleepiness and Cataplexy Associated with Narcolepsy

Axsome Therapeutics is pleased to announce a new clinical trial of an investigational oral medication, AXS-12, for the treatment of excessive daytime sleepiness and cataplexy associated with narcolepsy. Participation in this study may last up to nine weeks. All enrolled subjects will receive study-related care at no cost.

You may be eligible if you: *

  • Are 18-70 years old
  • Have a diagnosis of narcolepsy with cataplexy

*The study doctor will discuss additional requirements.

Study sites are located in the following cities: New York, NY; Cincinnati, OH; Miami, FL; Chevy Chase, MD; Austin, TX; Alameda, CA; Colombia, SC; St. Petersburg, FL

To find out more information about this trial and to see if you qualify, please visit or

Clinical Trial to Treat Idiopathic Hypersomnia (IH)
Balance Therapeutics is recruiting IH patients for a clinical trial (ARISE2).

The clinical research study hopes to find a more effective treatment for those with IH. The study will look at the safety and effectiveness of the study drug on mental fogginess, sleep, functionality, and quality of life in those with IH.

To qualify for this study, the participants must meet the following criteria:

  • Male or female 18 to 70 years of age
  • Hypersomnia that began between ages 10 and45
  • Prior diagnosis of IH
  • Stimulant use is allowed if certain criteria are met
  • No diagnosis of severe sleep apnea
  • No use of a CPAP machine when you sleep at night
  • No history of another disorder causing hypersomnia other than IH (includes narcolepsy type 1, narcolepsy type 2, any circadian rhythm sleep-wake disorder, or severe periodic limb movement disorder)

To learn more about this clinical trial, go to this website. Learn more by viewing this flyer, or read more about the study and the investigational drug on this flyer. If you are interested or if you qualify for this study, email or call 650-351-7677.

Research Survey for Parents of Children with Narcolepsy or Other Sleep Problems
Has your child been diagnosed with narcolepsy? Or, have you taken your child to the doctor where the main reason for the visit was to address the child’s sleepiness?

If so, you are invited to take a survey to help pediatricians detect narcolepsy in children. The survey will take about 30 minutes to complete. You will receive a payment of $25 for completing the survey.

By participating, you may help pediatricians identify the symptoms of narcolepsy in children and make the correct referrals to sleep specialists. For more information, please email or call 1-866-658-9749 (see this flyer for full details). Your participation in this survey is voluntary. It will not affect your child’s current treatment.
Your answers will be kept confidential, and will not be shared with your doctor. Your personal information will be protected. Your name will not be included on any reports or publications.

Mapi, an Icon Plc., a research company is conducting the Pediatric Narcolepsy Screening Questionnaire on behalf of the study sponsor.

Taken Xyrem in the Last Two Years? You Can Participate in This Study!
Have you taken Xyrem within the past two years? Harvard Medical School and Brigham and Women’s Hospital is currently conducting interviews to determine how FDA-mandated safety programs impact the prescribing and use of drugs like Xyrem.

Little is known about the impact of such programs on physicians, patients, and manufacturers, including whether they increase prescribing burdens, reduce patient access, enhance costs, or improve patients’ experiences with their illnesses. This study will seek to answer these questions. Participation will involve a 60-minute interview. Upon successful conclusion of the interview, study participants will receive a $50 Amazon gift card.

If you have received Xyrem within the past two years, you may be eligible. For more information, please contact the study principal investigator, Dr. Ameet Sarpatwari at

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 or call us at 619-294-4302 to find out more and to see if you qualify.

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.

Effect of Diagnostic Delay in Narcolepsy on the Frequency of Major Adverse Life Events Questionnaire
The purpose of the study is to examine the relationship between a delayed diagnosis of narcolepsy and patient-reported adverse events including job loss, relationship loss, suicide ideations/attempts, and auto accidents.

Your participation in this survey is completely voluntary. If you decide to participate now you may change your mind and stop at any time for any reason without penalty. You will not be paid to answer this survey. This is an anonymous survey. The collected information will be kept confidential and only the research investigators have access to it.

You must be 18 years old or older. To participate, use this link.

For more information on current clinical trials visit the National Institutes of Health’s clinical trials website.

Do NOT follow this link or you will be banned from the site!