If you are thinking about taking part in a research study, including a clinical trial, there’s a lot to consider. Check out our FAQs, as well as our lists of Ongoing Research Studies below and results from Past Research Studies. Please contact us at if you know of any additional studies or results, or if the recruitment status for a study has changed, etc… You may also be interested in our SomnusNooze articles about Research Studies.
Note: If you are interested in trying a clinical trial treatment that is not available in your country, a company like WEP Clinical may be able to help you access this treatment.
DISCLAIMER: This listing is provided merely for informational purposes. Listing a study on this site/web page does not mean that it has been independently evaluated by the Hypersomnia Foundation. The safety and scientific validity of a study listed here is the responsibility of the study sponsor and investigators, not the Hypersomnia Foundation. Before making any decision as to whether or not to participate in a particular research study, you should (1) know the risks and potential benefits of that research study, and (2) consult your own healthcare provider.
The Hypersomnia Foundation’s International Registry at CoRDS
Have IH or a related disorder? Be sure to participate in (and keep updating) the Hypersomnia Foundation’s registry at CoRDS (Coordination of Rare Diseases at Sanford). NOW RECRUITING people with IH and all related disorders INTERNATIONALLY! CLICK HERE for more information and to enroll or update. CoRDS is also listed at ClinicalTrials.gov.
And check out some initial results from the registry:
- 2018 Trotti et al, Self-Reported Sleep Inertia in the Hypersomnia Foundation Registry.
- 2020 Trotti et al, IH Symptom and Treatment Insights from the HF Patient Registry.
Pregnancy and Medication Registries
NOW RECRUITING pregnant women. If you are taking (or plan to take) any medication while pregnant, we strongly encourage you to participate in Pregnancy Registries to help further knowledge about medication safety during pregnancy. You can find a list of these Pregnancy Registries in the U.S. HERE. For pregnancy registries in other countries, ask your doctor(s) to direct you (and then please share this information with the HF at ).
Qualitative Health Research Study on Living with IH
NOW RECRUITING adults age 18-75 with IH for one-on-one telephone interview to discuss your experience living with IH. CLICK HERE. Adelphi Values is working with a major pharmaceutical firm conducting a qualitative health research study for idiopathic hypersomnia (IH) and is currently recruiting adults who have idiopathic hypersomnia to participate in a one-on-one 90-minute telephone interview to learn more about your experience with IH and how it affects your life, and to get your feedback on an IH patient questionnaire.
You will receive $150 for completing the 90-minute interview.
You may qualify to participate in this study if you:
- are between 18 and 75 years of age;
- have a clinician confirmed diagnosis of IH and are able to provide documentation confirming diagnosis;
- have an average nightly total sleep time of 7 hours or more;
- do not have other sleep related disorders such as sleep apnea or parasomnia;
- are fluent in English.
No medication will be given or tested as part of this study.
If interested in participating:
- Call 617-720-0001 and ask for Samantha Power to obtain additional information about the study and to have any questions you may have about the study answered;
- Additional exclusions may apply for participation in this study. Please contact Adelphi Values to learn more.
- Your participation in the interview does not replace and will not affect any treatment or assistance that you currently receive or may receive in the future.
- Your name and contact information will remain confidential and will not be shared with anyone.
Pathophysiology of Narcolepsy and Idiopathic Hypersomnia: a Multimodal Neuroimaging Study
NOW RECRUITING people with IH and narcolepsy (no geographical restriction, but if participants come from another time zone, they will require some adaptation to the study time zone prior to beginning the study). The project is to investigate brain regions underlying narcolepsy (with or without cataplexy) and idiopathic hypersomnia. The study includes an MRI scan session and two (non-consecutive) overnight sleep sessions at the sleep laboratory at the Institut Universitaire de Gériatrie de Montréal Research Center on Queen Mar Road in Montreal, Canada. Inclusion criteria are (1) Diagnosis of idiopathic hypersomnia or narcolepsy with or without cataplexy; (2) Age of 18 or more. Exclusion criteria are (1) Other sleep disorders; (2) Neurological disorders or head trauma; (3) Psychiatric disorders or use of psychotropic drugs; (4) Pregnancy or breastfeeding; (5) Pacemaker or metallic prosthesis. Participants will receive Can$200 of compensation if they complete the full study. For travel costs (if required, for those from other provinces or countries), up to Can$150 in travel reimbursements can be provided. If interested, please contact Elizaveta Frolova, Research Coordinator, via email: .
Pediatric Hypersomnia Screening Survey
NOW RECRUITING children with IH, narcolepsy, other sleep disorders, or normal healthy sleep in the U.S. Dr. Kiran Maski, pediatric neurologist and sleep medicine specialist at Boston Children’s Hospital, and a member of the Hypersomnia Foundation’s Medical Advisory Board, has developed a questionnaire that aims to improve screening for narcolepsy and idiopathic hypersomnia, with the goal of helping health care professionals identify hypersomnia symptoms quickly. Boston Children’s Hospital is looking for participants between the ages of 8-18 years who have been recently diagnosed (within 1 year) with narcolepsy or idiopathic hypersomnia (or who are awaiting diagnosis with sleep study testing) to answer an online questionnaire, which should take no more than 10-15 minutes. They are also looking for children to take the survey as a clinical control group, who 1) are healthy, medication free, and without sleep problems or 2) have any other type of diagnosed sleep disorder (insomnia, sleep apnea, restless leg, delayed sleep phase, etc.). As a token of appreciation, the researchers will provide a $10 gift card if you qualify and complete the survey. If you would like to learn more about the study or are interested in participating, please send an email to Neuro Sleep Research () or call 617-919-6212. More info HERE.
Clarithromycin Mechanisms in Hypersomnia Syndromes
NOW RECRUITING adults age 18-45 with IH and narcolepsy type 2 at Emory University in Atlanta, GA, U.S.: CLICK HERE. “The purpose of this study is to evaluate a medication called clarithromycin for treating sleepiness in two related conditions, narcolepsy without cataplexy and idiopathic hypersomnia. Studies have shown that clarithromycin can reduce sleepiness, but researchers do not know how clarithromycin does this. This study will look at brain activity (on magnetic resonance imaging [MRI] and electroencephalogram [EEG] brainwaves), inflammation, bacteria living in the gut, and cerebrospinal fluid, to better understand how clarithromycin can reduce sleepiness. This study will recruit 92 participants who will be randomized to receive clarithromycin or a placebo for 14 days.”
Modafinil Versus Amphetamines for the Treatment of Narcolepsy Type 2 and Idiopathic Hypersomnia
NOW RECRUITING adults with IH or NT2 (who are newly diagnosed and untreated) at Emory University in Atlanta, GA, U.S.: CLICK HERE. “This study will evaluate which medication works better to improve sleepiness. The researchers will also see which medication is better for other symptoms including difficulty waking up and difficulty thinking, as well as seeing which medication causes fewer side [effects]. Finally, this study will see if any information about patients (such as age or sleep study features) predicts responding better to one medication or the other.”
Transcranial Direct Current (tDCS) Stimulation Therapy for Central Hypersomnia Without Cataplexy
NOW RECRUITING adults age 18-70 with IH and narcolepsy type 2 at The Ohio State University: CLICK HERE. See also: A Pilot Study of tDCS Looks Promising for the Treatment of Idiopathic Hypersomnia.
Sodium Oxybate (Xyrem) for Treatment of Excessive Daytime Sleepiness due to IH
NOW RECRUITING adults age 18-60 with IH in FRANCE: CLICK HERE. This study, sponsored by the University Hospital in Montpellier, France, will evaluate the efficacy of sodium oxybate (marketed as Xyrem) on excessive daytime sleepiness in people with idiopathic hypersomnia.
Constitution of a Clinical, Neurophysiological and Biological Cohort for Chronic Sleep Disorders Responsible of Hypersomnolence (Somnobank)
NOW RECRUITING people with hypersomnias in France: CLICK HERE. University Hospital in Montpellier, France is looking for volunteers age 8 and older suffering from chronic sleep disorders. The creation of a Clinical, Neurophysiological and Biological Cohort will focus on collecting data on severity of symptoms and genetic testing of blood samples to better understand the pathophysiology of hypersomnolence. While cohorts of this type have aided the understanding of narcolepsy type 1, the pathophysiology of narcolepsy type 2 (NT2), idiopathic hypersomnia (IH) and Kleine-Levin syndrome (KLS) is still unknown, due to the small number of patients studied. The study is recruiting volunteers according to the following ratio: NT1 (33%), other central hypersomnias (NT2, IH, KLS, 33%), and hypersomnolence secondary to a neurological sleep or vigilance disorder (ADHD, RLS, parasomnias, 33%).
The Role of the Circadian System in Neurological Sleep-Wake Disorders
NOW RECRUITING adults age 18-35 with IH or narcolepsy type 1 (or who are healthy) at University Hospital Zurich: CLICK HERE.
Newcastle, NSW, Australia Study of Alternative Therapies in Hypersomnia
NOW RECRUITING adults with IH in Australia. The Adult Sleep Laboratory in Newcastle, NSW, Australia, is looking for adult volunteers for a research study investigating the effectiveness of alternative therapies on sleep and daytime alertness in adults aged 18 years or older with a diagnosis of hypersomnia. Visit the Sleep Health Foundation website for more information and to see if you qualify.
Validation of Non-Invasive Miniature Optical Sensors for Scoring Sleep Stages
NOW RECRUITING healthy adults and those with sleep wake disorders in Switzerland at University Hospital Bern: CLICK HERE.
Evaluation of the Efficacy of Sodium Oxybate (Xyrem) in Treatment of Post-traumatic Narcolepsy and Post-traumatic Hypersomnia
NOW RECRUITING adults with post-traumatic hypersomnias at Brigham and Women’s Hospital in Boston, MA, U.S.: CLICK HERE.
Hypersomnia in Major Depressive Disorder
NOW RECRUITING adults age 18-64 with major depression (with or without hypersomnolence) at The Chinese University of Hong Kong: CLICK HERE.
Importance of Sleep Deprivation in Differential Diagnosis of Primary Hypersomnia
RECRUITMENT STATUS UNKNOWN – Was recruiting adults in France with a sleepiness evoking a primary hypersomnia (not yet diagnosed with a hypersomnia): CLICK HERE.