Participate in Research

Your lived experience is invaluable.

People who volunteer to participate in sleep and sleep disorders 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 disorder 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 Sleep and Sleep Disorder Research Opportunities:

Narcolepsy & Pregnancy Research Survey

Narcolepsy researchers are conducting a survey study of adults with type 1 narcolepsy and recent pregnancies in order to assess the impact of narcolepsy on pregnancy, and vice versa. This study is open to adults (age 18+) with type 1 narcolepsy (with cataplexy) who have given birth within the last 2 years and live in the United States or Canada.

Alkermes: Vibrance-1 Study

The Vibrance-1 Study is researching an investigational oral study drug for the potential treatment of excessive daytime sleepiness symptoms. Adults 18-70 years of age with narcolepsy type 1 are invited to learn more about this important sleep disorder research.

Mayo Clinic Idiopathic Hypersomnia (IH) Research Study

Mayo Clinic researchers on the Arizona and Florida campuses are enrolling participants in a research study on Idiopathic Hypersomnia (IH). The purpose of this study is to evaluate the effect of low sodium oxybate (LSO) on total sleep time as measured by 24-hour polysomnography. Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Learn more and contact the study team to discuss study eligibility and potential participation at mayo.edu.

Jazz Pharmaceuticals: XYLO Study

The XYLO Study is a clinical study looking at blood pressure in people with narcolepsy. To take part, you must be taking or will be taking a high-sodium oxybate. Some people in this study will participate from home (virtual participants). They will have some home visits with study staff and some telemedicine visits by phone and/or video call. Other people will visit a study center (clinic participants) and will have some telemedicine visits. Please visit the study website at www.xyloforbp.com to learn more.

Jazz Pharmaceuticals: DUET Study

The DUET Study will evaluate daytime and nighttime effects of XYWAV® (low-sodium oxybate oral solution), also known as JZP258, in people with idiopathic hypersomnia (IH) or narcolepsy (Type 1 or Type 2). To learn more about the DUET Study, contact Clinical Trial Disclosure and Transparency at 215-832-3750 or ClinicalTrialDisclosure@JazzPharma.com.

Jazz Pharmaceuticals and IQVIA: NT1, NT2, or IH

Jazz Pharmaceuticals and IQVIA are currently looking for individuals (≥18 years of age) who have been diagnosed with NT1, NT2, or IH to take part in a paid research interview study. This study will help researchers learn more about what it is like to live with NT1, NT2, or IH, including: impacts on daily life, a better understanding of NT1, NT2, or IH, and how to best measure symptoms and impacts of NT1, NT2, or IH.

NAPS Consortium on REM Sleep Behavior Disorder

The NAPS Consortium on REM Sleep Behavior Disorder (RBD) has established a registry for individuals living with RBD, partners and family of someone diagnosed with RBD, and those wanting to learn more about RBD. This information is used to identify study participants, assist care teams providing care to individuals with RBD, and to study RBD treatments and outcomes.

PPMI: Parkinson’s Progression Markers Initiative

The Parkinson’s Progression Markers Initiative (PPMI) is recruiting people with REM Sleep Behavior Disorder (RBD). PPMI is a landmark study sponsored by The Michael J. Fox Foundation. It aims to better understand and measure Parkinson’s disease, including before movement symptoms begin. This information could lead to new treatments.  Through PPMI, scientists also could learn more about the biology and experience of RBD.

To learn more and get started, call 866-525-PPMI or email ppmistudy@michaeljfox.org

KP1077.D01: A Clinical Study in Adults with Idiopathic Hypersomnia (IH)

NOW ENROLLING adults (18 years and older) with IH. This study is being conducted by KemPharm, Inc to evaluate the safety and efficacy of KP1077 capsules in patients with IH. KP1077 capsules contain serdexmethylphenidate (SDX), a prodrug of dexmethylphenidate. It is an investigational medication for treating excessive daytime sleepiness (EDS) and other symptoms of IH, including sleep inertia (difficulty of waking up in the morning), and brain fog (lack of focus and mental clarity; forgetfulness and confusion).

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 – 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.

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 and sleep disorder research and clinical trials. Your efforts help to build a brighter future! 

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