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April 11, 2017

In HF News, Research Studies Articles, Take Action!

Let Sleep Researchers Know What’s Important to YOU

HF urges the entire hypersomnia community, including people with IH, people with narcolepsy, all supporters and healthcare professionals, to take a short survey prepared by Project Sleep in partnership with the University of Arizona "to capture perspectives of the narcolepsy and hypersomnia community." Julie Flygare of...

April 5, 2016

In Personal Journey Stories, Research Studies Articles

What Is It Like to Participate in a Clinical Trial?

“I don’t want to do it,” I said to my mom as we entered the elevator. “Let’s just go talk to them,” she replied to my dismay. I didn’t want to be there. I didn’t want to have hypersomnia. I didn’t want to do a clinical...

January 5, 2016

In Research Studies Articles, Take Action!

BUNIHPPS Study Final Reminder

This is your final reminder email about BUNIHPPS- a survey research study for patients with narcolepsy or idiopathic hypersomnia. Dr. William DeBassio and Sara Kowalczyk are the study investigators of the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study (BUNIHPPS). The researchers thank all who have...

December 8, 2015

In HF News, Research Studies Articles, Take Action!

The First Multi-Site Clinical Trial for IH and Type 2 Narcolepsy in the US Is Underway

ARISE 201 is the first double-blind, placebo-controlled, crossover, multicenter study of a drug (BTD-001) for the treatment of idiopathic hypersomnia (IH) and type 2 narcolepsy (T2N) in adults. More than 20 study sites throughout the United States are currently prescreening or screening people with IH and T2N...

November 10, 2015

In HF News, Research Studies Articles, Take Action!

BUNIHPPS – An Online Research Survey for Narcolepsy & IH Patients

http://tiny.cc/BUNIHPPS Dear IH Community members: A research team at Boston University has developed BUNIHPPS -- a survey research study for patients with narcolepsy and idiopathic hypersomnia. Also called the Boston University Narcolepsy and Idiopathic Hypersomnia Patient Perspectives Study, BUNIHPPS is an anonymous online survey forging into new...

October 27, 2015

In HF News, Research Studies Articles, Take Action!

Research Opportunity

Victoria University, Melbourne Australia is commencing a study about the general health and well-being of people within three groups. One group will be those with both narcolepsy and cataplexy. Cataplexy is a sudden loss of muscle tone, often triggered by emotional arousal. Another group will be...

July 14, 2015

In Personal Journey Stories, Research Studies Articles

Share Your Journey | My Way of Saying That Research on IH Matters

The day a doctor finally took me seriously when I told him about always being tired, oversleeping almost every day, and generally walking through life in a sleepy fog was one of the best days of my life. I wasn't lazy! I wasn't alone! There...

March 11, 2015

In HF News, Research Studies Articles, Take Action!

First Industry-Sponsored Clinical Trial of a Treatment for Idiopathic Hypersomnia and Narcolepsy without cataplexy

NeuroTrials, Inc., has begun recruiting people to take part in the testing of a new treatment for idiopathic hypersomnia and narcolepsy without cataplexy. This small phase 1 study will test the safety and efficacy of a drug that is taken by mouth and swallowed. The...

Research Studies Articles

Let Sleep Researchers Know What’s Important to YOU

What Is It Like to Participate in a Clinical Trial?

BUNIHPPS Study Final Reminder

The First Multi-Site Clinical Trial for IH and Type 2 Narcolepsy in the US Is Underway

BUNIHPPS – An Online Research Survey for Narcolepsy & IH Patients

Research Opportunity

Share Your Journey | My Way of Saying That Research on IH Matters

First Industry-Sponsored Clinical Trial of a Treatment for Idiopathic Hypersomnia and Narcolepsy without cataplexy

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