The Hypersomnia Foundation board of directors recently announced the launch of the Hypersomnia Foundation’s Registry at CoRDS (Coordination of Rare Diseases at Sanford).
In its e-newsletter, the Hypersomnia Foundation states:
Whether you have idiopathic hypersomnia, Kleine-Levin syndrome or narcolepsy type 1 or 2, please enroll in the Registry today to help solve the puzzle of hypersomnia. Your information will help researchers comprehend the journey that people with hypersomnia travel in their search for a diagnosis and will answer many other questions, including the symptoms that you experience, which may help to distinguish among these disorders, and the treatments that have and have not worked for your symptoms. Registration is simple (the figure below describes the process). Simply go to http://www.sanfordresearch.org/cords/ and click on the ENROLL NOW button.
A patient registry is an organized system that collect standardized information about a population who share a common condition or experience to serve a scientific, clinical, or policy purpose.