Researchers/
The Hypersomnia Foundation supports researchers and pharmaceutical companies working toward improving the lives of people with IH and related hypersomnias. Take advantage of our numerous free and vetted resources.
Researchers/
About IH and Its Treatment
- IH Summary: Characteristics & Diagnostic Criteria. Access and print our medical advisory board-vetted summary, or contact us to request copies.
- Classification of Hypersomnias. An up-to-date and detailed discussion of this topic, vetted by our medical advisory board.
- Treatment. An up-to-date and detailed review of current and upcoming treatment options for IH and narcolepsy, vetted by our medical advisory board.
Researcher Resources
- Considerations for Professionals Working With People Who Have Hypersomnias. Access HF’s Guides for 1) Researchers; 2) Survey Design; and 3) Sleep Study Centers & Research Study Sites.
- Idiopathic Hypersomnia Severity Scale (IHSS). Get free access to this validated tool designed specifically to measure the spectrum of IH symptoms. And read more about how this tool has been used to measure outcomes in a clinical trial.
- Clinical Trials/Research Studies for participants with IH and related hypersomnias, such as narcolepsy and KLS. HF can list your study and help you recruit participants. Contact us.
- Journal Article Summaries. Check out our collection, and promote your research by providing us with a layperson summary.
Events & Speakers
- Learn more about our speakers, where we’ve been and where we’re going.
- Watch conference videos.
- Attend, sponsor, and/or participate in a cutting-edge HF event.
- HF also attends a number of conferences each year to promote awareness and provide education.
- If you would like to sponsor or speak at a future HF event, meet with an HF board member, OR are interested in finding a speaker (patient advocate or medical professional) OR a patient panel to discuss “living with IH”, please contact us.
HF’s International Patient Registry
- Our registry at CoRDS (Coordination of Rare Diseases at Sanford) contains data on nearly 3500 people with IH and the related hypersomnias. It’s free for qualified researchers to apply to access the data and/or to communicate with the respondents. Contact CoRDS directly at cords@
sanfordhealth.org or 1-877-658-9192. - Review the complete registry questionnaire HERE.
- Please encourage patients with IH and related sleep disorders to join this registry. It’s free and the data is deidentified.
- Check out some initial results from the registry: 2020 Trotti et al, IH Symptom and Treatment Insights From the HF Patient Registry.