Participate in Research

Your lived experience is invaluable.

People with sleep disorders who volunteer to participate in research play a critical role in advancing science and medicine. Without volunteers willing to participate, clinical research studies simply would not be possible.

There are various ways to get involved in research—from taking an online surveys to participating in focus groups or enrolling in a clinical trials. We are sharing links to various sleep and sleep disorders research opportunities and clinical trials here to help raise awareness about clinical research efforts in our community. Not everyone will be eligible for every study, please click the links to read details and follow up with the research teams directly with any questions.

Current Research Opportunities:

CANADA: Studying brain profiles of narcolepsy type 1, type 2 and IH

To better understand the brain of people with narcolepsy and idiopathic hypersomnia, Concordia University (Montreal – Canada), is looking for patients that are willing to participate in scientific research. The goal of this study is to learn more about the causes and brain effects of hypersomnia. We are currently looking for people with narcolepsy or idiopathic hypersomnia that are between 18-64 years old. It may be required to temporarily stop medication to participate (e.g. 2 days for stimulants) and compensation for participation and travel expenses will be offered. For more information, please contact hypersomnia.research@gmail.com.

Boston Children’s Hospital – Looking for Focus Group Participants

Boston Children's Hospital

Share your experience: Boston Children’s Hospital’s Neurology Sleep Research Team is currently looking for children with narcolepsy (between the ages of 8-12 years) and one parent/guardian to take part in a 90 minute on-line, recorded focus group to discuss narcolepsy symptoms and the impact of the symptoms. This project will help researchers to develop a Pediatric Narcolepsy Patient Reported Outcomes Scale (PN-PROS).

Open Enrollment for TENOR Research Study

The Transition Experience of persons with Narcolepsy taking Oxybate in the Real-world (TENOR) study is enrolling individuals with narcolepsy who are transitioning from Xyrem to Xywav within the previous or upcoming 7 days. This study is entirely virtual and was designed with the help of a patient advisory board and input from narcolepsy specialists. As a part of your participation, you will receive reports summarizing your self-reported data throughout the study. At the end of the study, you will receive a consolidated report of your personal data.

The Sparkle 1501 Study for Narcolepsy

The SPARKLE 1501 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.

Open Label Study of Once-Nightly Formulation of Sodium Oxybate

This study is evaluating the long-term safety and tolerability of a once nightly formulation of sodium oxybate for extended-release oral suspension (FT218) and the ability to switch from twice-nightly immediate release sodium oxybate to once-nightly FT218 for people with narcolepsy.

ClinicalTrials.gov

Looking for more opportunities? ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. You can search for actively recruiting studies that you may be able to participate in or learn about new interventions/treatments that are being considered.

Thank you to all those who consider participating in sleep research and clinical trials. Your efforts help to build a brighter future! 

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