STANFORD’S KLS RESEARCH PROGRAM SEEKING VOLUNTEERS FOR A VIRAL STUDY

Over the past two years, the Center for Narcolepsy research (CNR) at Stanford University has invested a great deal of time and energy into investigating the nature of Kleine-Levin Syndrome (KLS).  In this research, the CNR works very closely with the KLS Foundation.  Below is a brief synopsis of that research and the results, as well as an announcement seeking volunteers for a new KLS research effort.

ON GOING KLS VIRAL STUDY

In 2005 and 2006, researchers systematically reviewed the case histories and demographics of the largest sample of KLS patients every presented.  The results of this analysis (Arnulf, 2005) showed a worldwide distribution of KLS.  The study also revealed 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 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.

For this KLS viral research program, CNR needs to collect mucus samples from 10 to 20 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) 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 BEGINING 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 at .  Thank you, and I look forward to hearing from you soon.