Understanding Narcolepsy, Page 4
The first portion of our fact sheet expands on the information available about narcolepsy in the separate document on brain basics (see “Brain Basics: Understanding Sleep”), focusing on symptoms and causes of narcolepsy. The latter part covers diagnosis, treatment, and coping strategies.
What Research is Being Done?
Within the Federal government, the National Institute of Neurological Disorders and Stroke (NINDS), a component of the National Institutes of Health (NIH), has primary responsibility for sponsoring research on neurological disorders. As part of its mission, the NINDS supports research on narcolepsy and other sleep disorders with a neurological basis through grants to major medical institutions across the country.
Within the National Heart, Lung, and Blood Institute, also a component of the NIH, the National Center on Sleep Disorders Research (NCSDR) coordinates Federal government sleep research activities and shares information with private and nonprofit groups. NCSDR staff also promote doctoral and postdoctoral training programs, and educates the public and health care professional about sleep disorders. For more information, go to the NCSDR website at http://www.nhlbi.nih.gov/about/ncsdr/index.htm.
NINDS-sponsored researchers are conducting studies devoted to further clarifying the wide range of genetic factors-both HLA genes and non-HLA genes-that may cause narcolepsy. Other scientists are conducting investigations using animal models to identify neurotransmitters other than the hypocretins that may contribute to disease development. A greater understanding of the complex genetic and biochemical bases of narcolepsy will eventually lead to the formulation of new therapies to control symptoms and may lead to a cure. Researchers are also investigating the modes of action of wake-promoting compounds to widen the range of available therapeutic options.
Scientists have long suspected that abnormal immunological processes may be an important element in the cause of narcolepsy, but until recently clear evidence supporting this suspicion has been lacking. NINDS-sponsored scientists have recently uncovered evidence demonstrating the presence of unusual, possibly pathological, forms of immunological activity in narcoleptic dogs. These researchers are now investigating whether drugs that suppress immunological processes may interrupt the development of narcolepsy in this animal model.
Recently there has been a growing awareness that narcolepsy can develop during childhood and may contribute to the development of behavior disorders. A group of NINDS-sponsored scientists is now conducting a large epidemiological study to determine the prevalence of narcolepsy in children aged 2 to 14 years who have been diagnosed with attention-deficit hyperactivity disorder.
Finally, the NINDS continues to support investigations into the basic biology of sleep, including the brain mechanisms involved in generating and regulating REM sleep. Scientists are now examining physiological processes occurring in a portion of the hindbrain called the amygdala in order to uncover novel biochemical processes underlying REM sleep. A more comprehensive understanding of the complex biology of sleep will undoubtedly further clarify the pathological processes that underlie narcolepsy and other sleep disorders.
How Can I Help Research?
The NINDS contributes to the support of the Human Brain and Spinal Fluid Resource Center in Los Angeles. This bank supplies investigators around the world with tissue from patients with neurological and other disorders. Tissue from individuals with narcolepsy is needed to enable scientists to study this disorder more intensely. Prospective donors may contact:
Human Brain and Spinal Fluid Resource Center
Neurology Research (127A)
W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg. 212
Los Angeles, CA 90073
310-268-3536
24-hour pager: 310-636-5199
Email: RMNbbank@ucla.edu
http://www.loni.ucla.edu/~nnrsb/NNRSB
Where can I get more information?
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders
and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:
BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
Information also is available from the following organizations:
Narcolepsy Network, Inc.
631B Ten Rod Road
North Kingstown, RI 02852
narnet@narcolepsynetwork.org
http://www.narcolepsynetwork.org
Tel: 888-292-6522
401-667-2523
Fax: 401-633-6567
National Sleep Foundation
1522 K Street NW
Suite 500
Washington, DC 20005
nsf@sleepfoundation.org
http://www.sleepfoundation.org
Tel: 202-347-3471 (no public calls please)
Fax: 202-347-3472
National Heart, Lung, and Blood Institute (NHBLI)
National Institutes of Health, DHHS
31 Center Drive, Rm. 4A21 MSC 2480
Bethesda, MD 20892-2480
http://www.nhlbi.nih.gov
Tel: 301-592-8573/240-629-3255 (TTY)
Recorded Info: 800-575-WELL (-9355)
This document appears courtesty of the National Institute of Neurological Disorders and Stroke.
