Participate in Research

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.

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.

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

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).

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.

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.

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? 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.