National Institute of Health Grant

The Stanford University Center for Narcolepsy and Hypersomnia Research has received funding from the National Institutes of Health to study the genetics of Kleine-Levin Syndrome (KLS).  This multi-year research grant is the first ever NIH-funded study on this disorder that manifests as devastating recurrent episodes of hypersomnia, cognitive derealization and hyperphagia.

Research Goal
This grant will provide the means to conduct a genome wide association study in individuals with KLS.  The research will be conducted with 200 blood samples from individuals with KLS and 200 healthy control samples.  Our goal is to find genes that predispose individuals to KLS. The hope is that these discoveries will shed new light onto the pathophysiology of KLS, with possible therapeutic application in this disabling and poorly understood condition.  The Stanford University research group is optimistic that once predisposing genes are found, the cause of this condition will be at hand.  “Understanding the cause of a condition is the first step to treatment,” according to Professor Mignot.

About Genome-wide Association Studies
Genome-wide association studies can identify common genetic factors that influence health and disease.  This type of genetic study looks for genetic (DNA) variations across the entire human genome to identify genetic associations that are present or absent in a given disease, such as KLS.  Whole genome information, combined with clinical and other data, offers the potential for understanding biological processes affecting human diseases, improvement in the prediction of disease, patient care, and insights for therapeutic intervention.

As a patient, how can I help?
As a patient or family member, you can help in several ways.  You can support the KLS Foundation and KLS research.  You can participate in ongoing research protocols. To reach the goal of the Stanford University KLS genetic study, we need to continue recruiting as many KLS patients as possible.  Only patients with typical KLS symptoms will be included, to reduce the possibility of a false diagnosis. These patients and their parents (if willing) are asked to complete a detailed questionnaire.  In addition, they are sent a blood sampling kit with a prepaid FedEx mailer and asked to arrange to get their blood drawn and returned to the Stanford University research lab (at our expense).  It is most important for participating patients to follow up and return these materials, as it is very costly for us to have incomplete files and kits that have not been sent back.

If you have any interest in participating or have questions, please contact Neal Farber, PhD at the KLS Foundation: or contact
Tom Rico, KLS Clinical Research Coordinator
Tel: (650) 725-1773
Fax: (650) 725-4913
http://med.stanford.edu/school/Psychiatry/narcolepsy/ 

Center for Narcolepsy & KLS Research
Department of Psychiatry and Behavioral Sciences
Stanford University School of Medicine
Palo Alto, CA 94304

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