Stanford’s KLS Research Program Seeking Volunteers For A Viral Study

Studies at the Center for Narcolepsy research (CNR) at Stanford University reveal that in 72% of the analyzed cases, the initial episode was preceded by symptoms of infection (i.e. flu-like syndrome, fever, cold, etc.).  Furthermore, in over half of the analyzed cases, patients reported the same flue-like symptoms at the beginning of subsequent KLS episodes.  The incidence of infection at the onset of KLS episodes seems far too frequent to be due to mere chance.  As such, researchers at CNR and the KLS Foundation hypothesize that the cause of KLS may be, at least in part, viral.  This finding, in conjunction with the development of sophisticated equipment at the University of California at Los Angeles capable of identifying viruses at much lower concentrations than previously possible, has led to the development of a research project for which you may be eligible.

Ongoing KLS Viral Study
For this KLS viral research program, CNR needs to collect mucus samples from KLS patients who are experiencing flue-like symptoms at the beginning of a given episode to possibly identify a viral component to KLS.  To do so, we will send participants a kit that includes two glorified Q-tips, called viral swabs.  At the beginning of an episode, we ask that the participant have a healthcare provider (at a local clinic, physician’s office, or at home) use the swabs to obtain a mucus sample from both the nose and the throat.  That sample is then frozen and shipped to CNR in a cooler full of dry ice.  (Dry ice can typically be found at a hospital, clinic, physicians’ office, commercial lab, or some grocery stores.)

In order to be eligible to participate in this study, an individual must meet the following criteria:

1) Have KLS, although the individual need not currently be in an episode.

2) Typically (thought not necessarily always) experience flu-like symptoms prior to, or at the beginning of, a KLS episode.
Do you experience flu like symptoms at the beginning of a KLS episode? Stanford needs your help.
Everyone involved is very excited about the potential results of this study and the implications that it holds for future understanding and treatment of KLS.

To complete this study, however, we require a large sample of active KLS patients.  This is a challenge considering the rarity off KLS amongst the general population and the unpredictability of KLS episodes.  That is where you come in.  In order to participate in the study, you would only be required to donate a blood sample, a mucus sample, (we will provide everything needed for both the blood and mucus donation, including financial compensation), and fill out a questionnaire.

If you are interested in the research and are eligible to participate, please email Neal Farber,PhD at facts@klsfoundation.org, or contact:
Mali Einen
E-mail: einen@stanford.edu
Phone: 650-721-7550
Fax: 650-721-3466
http://med.stanford.edu/narcolepsy/KLS.html

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

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