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Research

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.

New Study for Children with Narcolepsy

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 study involves completing a questionnaire, which will take about 30 minutes to complete, and the parent will be compensated for their time ($25). The study will require a confirmation from a doctor regarding the child’s diagnosis, which will be taken care of by the study coordinator once the appropriate consent forms are completed.

By participating, you may help pediatricians identify the symptoms of narcolepsy in children and make the correct referrals to sleep specialists.

Please visit this site to learn more.

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 www.theconcertstudy.com or https://clinicaltrials.gov/show/NCT03881852

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 arise2@balance-therapeutics.com or call 650-351-7677.

Call for nightmares
Dr. Clare Johnson, President of the International Association for the Study of Dreams, author of Dream Therapy, Mindful Dreaming, and Llewellyn’s Complete Book of Lucid Dreaming, is writing a new book on nightmares.

Do you have a nightmare you’d like to share for her new book? Anything goes: nightmares linked to sleep paralysis, narcolepsy, or PTSD, recurring bad dreams, sleep terrors, the dark side of out-of-body experiences. She’s also gathering nightmare stories linked to healing, creativity, and personal transformation. Did a nightmare change your life? Did you have a lucid breakthrough that resolved a bad dream? Please write to her at nightmarebook@hotmail.com or via the contact page on her website: www.deepluciddreaming.com.

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 contact.na@proclinica.info 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 asarpatwari@partners.org.

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.

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.

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!