Learn about clinical trials

A paid opportunity to share your experiences of living with idiopathic hypersomnia in a one-time, individual interview

WHO IS ELIGIBLE?

• Adults aged 18 years and older and residing in the United States.
• Diagnosed with idiopathic hypersomnia by a physician. (Proof of diagnosis is required.)

PARTICIPATION DETAILS

• If you are eligible, you will be invited to participate in an individual, web-based interview about how idiopathic hypersomnia affects you. The interview will last no more than 90 minutes.
• Participants will also be asked to complete a brief demographic and health background form before the interview (approximately 5 minutes).
• As a thank you for your participation, you will receive $125.00.

If you are interested in participating or have any questions about the study, please call Jane Beck with The Brod Group at (415) 317-3987 or email jane@thebrodgroup.net.

You may be able to participate if you: 

• Are 18–70 years of age
• Have a diagnosis of narcolepsy with cataplexy
• Have 4 or more episodes of cataplexy per week if not on medication or prior to starting anti-cataplexy medication

Narcolepsy with cataplexy can impose a significant burden on daily life. Researchers are working to identify treatment options that may have an impact on individuals with this disorder.

The DynamicLight Study is evaluating the safety and effectiveness of an investigational study drug that is being studied for narcolepsy with cataplexy. The entire study will last up to about 31 weeks. During this time, participants will be asked to attend up to 20 study visits.

For the first 16 weeks, all participants will receive the investigational study drug while also completing various study tests and procedures. The initial dose may be adjusted during the study treatment period. After the 16 weeks, participants will either continue taking the study drug or switch to a placebo (a substance that looks like the investigational study drug but does not contain any active ingredients) for up to 4 weeks.

You can play a role in helping researchers find more ways to study and treat narcolepsy with cataplexy by participating in this clinical research study.

Interested in participating? Learn More

Share Your Experiences With Idiopathic Hypersomnia or Narcolepsy - Paid Online Survey

Pinpoint Patient Recruiting, a market research recruitment company, is searching for people who are living with narcolepsy or  idiopathic hypersomnia (IH) to complete a 45-minute online survey. Researchers want to better understand the journey to diagnosis and treatment for these chronic illnesses as well as the impact they have on daily life.

Those who qualify to participate will receive $175 after they complete the survey as a thank you.

You may be eligible to participate if:

• You have been diagnosed with IH or narcolepsy
• You are a US resident aged 18 or older
• Have been prescribed medication to treat your condition
• Can provide proof of your diagnosis via an electronic medical record (EMR)

To see if you qualify for the study or to get more information, please visit https://www.pinpointpatientrecruiting.com/sleep-survey-hf or contact Ashley Maggio at ashley.maggio@pinpointpatientrecruiting.com. All information and responses will remain confidential.

NOW RECRUITING adults (ages 18-65) with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH) in the U.S. and Canada.

Orexin is a chemical in the brain that helps people to stay awake during the daytime. The purpose of this clinical trial is to evaluate the safety and efficacy of ORX750, an oral investigational orexin agonist, in people with NT1, NT2, and IH.

For further information about this clinical study, please see details at ClinicalTrials.gov. You will be able to review the study information, participation criteria, current locations, and study plan. If you have further interest in this study as a potential participant, please contact the study sponsor at CRYSTAL-1@centessa.com. Compensation for time and travel may be available.

NOW RECRUITING people diagnosed with idiopathic hypersomnia (IH) aged 18 to 70 (click here).

The purpose of this study is to research the safety and effectiveness of an investigational study drug taken orally once daily and how it may work in adults with IH. Individuals with IH may be eligible for the Vibrance-3 Study.

Orexin is a chemical in the brain that helps regulate the sleep/wake cycle. The investigational study drug, ALKS 2680, is an orexin-2 receptor agonist and may improve symptoms of IH.

Individuals will be evaluated by the study team to determine their eligibility to participate in this research. Each individual who qualifies will receive either the study drug or a placebo, as well as study-related medical exams and study-related laboratory tests, at no cost.

Compensation for time and travel may also be available.

To learn more:

• Visit VibranceStudies.com

Enrollment is now open for the KYRA Study, a clinical research study testing the safety and effectiveness of an investigational (not approved for use in clinical practice) drug for NT2.

Those who qualify to participate will receive all study-related care at no cost.

We recognize the impact of NT2 and the burden it can impose on daily life. Hope lies in the search for effective treatments. Your participation in this research will help our efforts to understand if this investigational drug can help those with NT2. Please consider joining us.

For more information about the KYRA Study, visit:  https://sleepdisorderstudies.com/HYF

Enrollment is now open for the ALBA Study, a clinical research study testing the safety and effectiveness of an investigational (not approved for use in clinical practice) drug for IH.

Those who qualify to participate will receive all study-related care at no cost.

We recognize the impact of IH and the burden it can impose on daily life. Hope lies in the search for effective treatments. Your participation in this research will help our efforts to understand if this investigational drug can help those with IH. Please consider joining us.

For more information about the ALBA Study, visit:  https://sleepdisorderstudies.com/HYF

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.

NOW ENROLLING adults (ages 18-65) with IH: CLICK HERE.

Mayo Clinic is seeking patients with idiopathic hypersomnia, ages 18-65 years, to participate in a research study. The purpose of this study is to evaluate the effect of low sodium oxybate on the ability to sleep for long periods of time.

You may be eligible to participate if you:

• Are a Mayo Clinic patient. 
• Diagnosed with idiopathic hypersomnia.
• Sleep for long periods of time.
• Have been prescribed/recommended low sodium oxybate but not started yet.

Additional details:

• Participation will last for 3-5 months and includes 6-7 study visits.
• We will ask you to complete two 24-hour sleep studies prior to starting low sodium oxybate and two additional 24-hour sleep studies after you are on a stable dose of low sodium oxybate. 
• Two sleep studies will be in a sleep lab while the other two will take place in your home. 
• During all sleep studies you will be asked to war an Axiviyt wristband to measure your activity levels.
• You will also be asked to wear earbuds that will tell us when you are asleep and when you are awake during the sleep study.
• You will be asked to sleep as much as possible at various times during the study.
• You will be asked to answer questionnaires, give blood samples, and complete physical examinations with measurement of vital signs.

You will be compensated for your time spent in this study.

For more information, contact a member of the study team at 480-574-2753 or visit the Mayo Clinic Research website. 

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%).

NOW RECRUITING people age 16 to 70 with idiopathic hypersomnia, narcolepsy, or other hypersomnolence disorder in Bern, Switzerland: CLICK HERE. This is an exploratory prospective, national, multi-center cohort study on clinical, electrophysiological and biological biomarkers of disease presentation and course.

NOW RECRUITING people who have ever had KLS: CLICK HERE.