Additional Research Studies

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A Web-Based Observational Study of Patient-Reported Outcomes in Adults With Narcolepsy

This is the Nexus Narcolepsy registry, a joint venture of Jazz Pharmaceuticals, Narcolepsy Network, and Wake Up Narcolepsy. See ClinicalTrials.govNOW RECRUITING people with narcolepsy INTERNATIONALLY: CLICK HERE to register.

Stanford University’s Kleine-Levin Syndrome Study

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

The Nuvigil and Provigil Pregnancy Registry

NOW RECRUITING pregnant women with narcolepsysleep apnea, and shift work disorder in the U.S.: CLICK HERE. See also HF’s web page Parenthood and Pregnancy: Considerations for People Who Have Hypersomnias.

Effect of MYODM on Quality of Life, Fatigue and Hypersomnia in Patients With Myotonic Dystrophy Type 1

NOW RECRUITING adults age 18 and up with myotonic dystrophy type 1 in Spain: CLICK HERE. This trial is testing the dietary supplement MYODM, which contains Theobroma cacao and caffeine for the treatment of excessive daytime sleepiness due to myotonic dystrophy type 1 (DM1).

Read more: Viewing Hypersomnias Through the Lens of Myotonic Dystrophy.

Portable EEG in Narcolepsy Type 1 and Healthy Volunteers

NOW RECRUITING people age 16 to 60 with narcolepsy type 1 and healthy volunteers in the U.S.: CLICK HERE. The study will assess whether a portable EEG device provides an EEG signal comparable to inpatient nPSG (noctural polysomnogram). The frequency and characteristics of wake and sleep patterns and transitions over multiple nights will also be characterized.

Microglial Activation in Narcolepsy Type 1 or KLS: Positron Emission Tomography (PET) Study

NOW RECRUITING people age 10 and older with narcolepsy type 1 or KLS, in France: CLICK HERE. The goal is “to study the cerebral microglial activation in PET in NT1 patients with recent evolution (appearance of the first symptoms – somnolence and cataplexy – less than 2 years ago) in comparison with controls; then analyze the effect of age, and the severity of symptoms on this PET imaging biomarker.”

Pediatric Narcolepsy Cohort Study of Sleep Architecture

NOW RECRUITING children up to age 18 Lyon, France: CLICK HERE. The goal is to evaluate the cognitive performance and the effects of narcolepsy treatments on sleep architecture and metabolic status.

Study of the Academic and Professional Course of Narcoleptic Patients

NOW RECRUITING children and adults with narcolepsy type 1, in France: CLICK HERE. This study proposes “to establish a comprehensive inventory of educational and professional trajectories of narcoleptic patients in France in order assess the specificity of the difficulties encountered by the people concerned in their life course and to appreciate the attitude of the academic and professional circle with respect to the disease.”

International Clinical Trial Registries


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