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 online surveys to participating in focus groups or enrolling in 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:

Project Sleep: Black American Sleep Focus Group Study

Project Sleep is partnering with sleep researchers Dr. Robert W. Turner II and Dr. Michael Grandner to hear first-hand perspectives on sleep and sleep disorders from Black Americans, trusted community and faith leaders, and health care providers. This study aims to uncover important insights that will inform future sleep awareness and education campaigns to reduce delays to diagnosis and treatment of sleep disorders in Black American communities. Focus groups will be held online starting April 3, 2023. Participants will attend one 90-minute session and receive $100 compensation.

INTUNE: A Clinical Study in Adults with Idiopathic Hypersomnia (IH)

The INTUNE study is being conducted by Harmony Biosciences to evaluate the safety and efficacy of pitolisant, an investigational medication for treating excessive daytime sleepiness (EDS) in people with idiopathic hypersomnia age ≥18 years. This study is also evaluating the effect of pitolisant on overall symptoms and severity of IH, sleep inertia, cognition, and general sleep-related impairment. For more information or to find a participating clinical site visit: NCT05156047 or Contact Harmony Biosciences by email at

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

Boston Children’s Hospital – Pediatric Narcolepsy Online Survey

Boston Children's Hospital

Currently there is no clinical tool to assess the broad symptoms of pediatric narcolepsy and their impact on daily functioning. We are a group of researchers from different academic hospitals (Boston Children’s Hospital, Stanford University, Geisinger Medical Center, The Hospital for Sick Children, and National Jewish Health) testing a pediatric narcolepsy patient reported outcomes tool to assess pediatric narcolepsy symptoms and their effect on daily functioning and quality of life. Our goal is to develop a clinical survey that can improve the care of pediatric narcolepsy.

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.

Looking for more opportunities? 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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