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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.

Restore Study of FT218

If you or your child are over 16 and have been diagnosed with narcolepsy, you may qualify for a research study. Managing your narcolepsy symptoms is challenging, so learning all your treatment options is very important. One option to consider is the RESTORE study of an investigational medicine, FT218, which is a once-nightly formulation of sodium oxybate.

In this study, FT218 will be taken orally once per night, before you go to bed, for up to two years. You’ll be asked to complete in‐person or virtual study visits about four times per year and also complete some brief questionnaires.

Who is eligible to participate in this study?
To qualify, you or your child must:

  • Be 16 years of age or older
  • Be diagnosed with narcolepsy with or without cataplexy
  • Have completed the REST ON Study and/or be receiving twice-nightly sodium oxybate.

To learn more, visit this website, download this PDF, or see the RESTORE study sites.

Mindfulness Mediation Program Study

If you have been diagnosed with narcolepsy and struggle with depression or anxiety, you may qualify for a study.

The Behavioral Sleep Medicine Lab at Northwestern is evaluating the feasibility of a mindfulness meditation program designed to reduce psychological distress for people with narcolepsy. 

Eligible volunteers will be asked to:

  • Complete an assessment to determine eligibility to participate.
  • Participate in a mindfulness intervention delivered through live videoconferencing.
  • Complete study assessments every four weeks for 12 weeks.

If you are interested in taking part in this study email [email protected] or call 312-503-6627.

The Sparkle 1501 Study for Narcolepsy

Further development is needed in treating narcolepsy, a sleep disorder that disrupts the brain’s ability to regulate sleep-wake cycles, causing persistent sleepiness throughout the day.

What is the purpose of the Sparkle 1501 Study?

This clinical study is testing an investigational drug (TAK-994) to see how safe and tolerable it is and how it affects a person’s narcolepsy symptoms.

Is study participation an option for me?

You may qualify if you:

  • Are 18-65 years old
  • Have been diagnosed with narcolepsy with or without cataplexy
  • Experience excessive daytime sleepiness
  • Have narcolepsy with cataplexy and experience more than or equal to 4 partial or complete episodes of cataplexy/week
  • Are willing to stop taking narcolepsy and cataplexy medications during study participation
  • Meet additional requirements as determined by a screening process

A study doctor and staff can explain to you in greater detail other requirements and eligibility criteria you would have to meet to participate in the study. Travel support and compensation for study participation may be available.

To learn more about the Sparkle 1501 Study and to see if you may qualify, visit this website.

Focus Group Participants Needed to Develop a Pediatric Narcolepsy Patient-Reported Outcomes Scale (PN-PROS)

Narcolepsy is a chronic neurologic condition that tends to occur most frequently during childhood and adolescence. Currently, there is no tool to assess the symptoms of narcolepsy that most significantly impact the daily functioning of children with narcolepsy. This study aims to develop a clinical tool health care providers can use to assess pediatric narcolepsy symptoms.

Pediatric patients with narcolepsy and their parent/guardian are invited to take part in a 90 minute online, recorded focus group to discuss narcolepsy symptoms and the impact of the symptoms. As a thank you for participating in the focus group, you will receive a $50 gift card.

Who is eligible for this study?

  • Patients between the ages of 8-17 years with a diagnosis of narcolepsy AND one parent/guardian
  • Participants must be able to understand the purpose of the study

If you would like more information on study requirements, compensation, or eligibility, please call the Neurology Sleep Research team at 617-919-6212, email [email protected], or see this flyer.

Pediatric Hypersomnia Screening Survey

Dr. Kiran Maski, a sleep physician and researcher, has developed a questionnaire that aims to improve screening for narcolepsy and idiopathic hypersomnia in the community. This survey will help school and health care professionals identify hypersomnia symptoms quickly. Participants are needed to complete online surveys and will receive a $10 gift card as a token of appreciation. Participation should take no more than 10-15 minutes.

Who is eligible for this study?

  • Patients between the ages of 8-18 years who have been recently diagnosed (within 1 year) with narcolepsy or idiopathic hypersomnia
  • Participants must be able to understand the purpose of the study

To learn more about the study, are interested in participating, contact [email protected], call 617-919-6212, or see this flyer.

The Impact of Sleep on Cognition and Emotion in Children/Adolescent Research Study

Research has shown that sleep disturbances can contribute to behavior and cognitive problems. This study will look at the effects of sleep on memory and emotional control in children/adolescents with narcolepsy with cataplexy compared to healthy controls.

Who is Eligible?
Children ages 8-18 years of age who are diagnosed with pediatric narcolepsy with cataplexy or who are healthy, medication-free, and without sleep problems

Participation Details
An overnight sleep study at Boston Children’s Hospital, two sessions of
IQ testing, wearing a wristwatch device for one week to measure sleep and wake activity, completion of online questionnaires, memory and emotion testing, and blood pressure monitoring before and after the study. Last, a single blood draw and urine sample are required upon waking in the morning. As a thank you, the participant will receive a $250.00 gift card.

To learn more about this study or are interested in participating,
email [email protected], call Madeline at 617-919-6212 or see this flyer.

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.

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 [email protected] 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.

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.