Recruiting TRIOs for Research
Why narcolepsy is HLA-associated is still a mystery. An autoimmune destruction of hypocretin-containing cells has been suggested as a likely cause, but all attempts to date have failed to confirm this hypothesis. One current area of emphasis in narcolepsy research involves the recruiting of blood samples from TRIOs -- a person with narcolepsy/cataplexy and both parents, if available. An international collaboration of researchers from over 14 countries, headed by Dr. Mignot’s group at the Stanford Center for Narcolepsy, are working to establish a large shared resource of DNA samples and demographic/phenotypic data of people with narcolepsy. The association with HLA DQB1*0602 has been established for quite some time but this alone is not responsible for one developing narcolepsy. An aim of the study is to perform detailed HLA typing to determine novel protective and susceptibility HLA alleles in narcolepsy, providing for further understanding of genetic risk in narcolepsy and relatives. An additional goal of this research is to identify and study other genes outside of the HLA complex that may contribute to narcolepsy susceptibility.
If you have an interest in participating in this important research project or have patients that might have an interest, please contact the Narcolepsy Network toll-free at (888) 292-6522 or (401) 667-2523 or email Narcolepsy Network,
call Stanford’s Center for Narcolepsy at 800-497-5337 or email the Center for Narcolepsy. Blood samples can be collected from anywhere in the world at no cost to the participant. Blood kits will be sent to willing participants (or their doctors) which include all necessary materials, a questionnaire and a prepaid Federal Express return bill. HLA typing results will be sent to all participants.
We look forward to working together with you to further understand narcolepsy!
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