A patient registry specific to hypersomnia has been a goal of the Hypersomnia Foundation (HF) since its incorporation in 2014. A patient registry houses information about a group of people with a medical condition, disease, or disorder that is collected in a standardized way. Registries are a rich resource of data that provides health-care professionals and researchers with first-hand information about people with certain conditions that can be probed to generate new ideas about the cause of disease, its natural history, best practices, as well as defining unmet clinical needs.
In 2015 the Hypersomnia Foundation partnered with Sanford’s Coordination of Rare Diseases (CoRDS) to create a “disease-specific” hypersomnia registry. With the counsel, input, and dedication of a task force made up of physicians, sleep medicine professionals, researchers, and other volunteers, the Hypersomnia Foundation began the complex task of creating a comprehensive registry specific to central disorders of hypersomnolence (CDH): idiopathic hypersomnia, narcolepsy types 1 and 2, and Kleine-Levin syndrome.
We are currently piloting the Hypersomnia Foundation’s questionnaires through a focus group. The focus group’s feedback will be reviewed and incorporated into the final version of the questionnaires and launched through CoRDS.
A future issue of SomnusNooze will provide details on how you will be able to include your hypersomnia relevant health information into this registry.
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