(Posted December 5, 1997 ? Issue 21; archived December 5, 1997)
The major adult-onset neurodegenerative diseases are
Huntington's disease, amyotrophic lateral sclerosis, Parkinson's disease, and Alzheimer's
disease. These incurable conditions affect millions of people worldwide. Online information
about these diseases encompasses everything from general descriptions to current research
to caregiver issues.
Huntington's Disease
Huntington's disease (HD) is an autosomal dominant disorder that usually
strikes in midlife and causes death in about 15 years. The disease is associated with
increases in the length of a CAG triplet repeat in a gene located on chromosome 4. The
gene for Huntington's disease was isolated in 1993. The definitive starting point for
finding HD information on the Web is the
Huntington's disease site
of Robert Laycock.
Laycock, "a person whose family is touched by Huntington's disease," started
his site in 1995. The resource is a well-organized collection of links to everything
on the Internet having to do with HD. Different sections address topics ranging from
general information and research news to patient care and finding support. Laycock
presents salient descriptions of each resource, and he updates the site weekly. There is
not much hard information here, but the site provides all the
necessary links for finding more resources.
Another useful HD site is
Huntington's Disease
Information, created by Renette Davis, a librarian at The University of
Chicago Library. The most impressive part of this Web site is the extensive
bibliography of HD literature since 1990. The bibliography
includes books, articles, audiovisual material, plays, and theses. Direct links are provided to
online material, and many documents are maintained at the site. Although the site has
not been updated since May 1997, it remains tremendously useful. Davis's
site has some overlapping information with Laycock's, but the sites complement each
other well. Do not be put off by the sites' low-tech feel: the lack of splashy graphics allows
faster access to the information you need.
The Hereditary Disease
Foundation is a nonprofit organization focusing on the study of Huntington's
disease. Their Web site, geared for researchers, includes testing protocols and
funding information. A biannual newsletter contains research news, study information,
and other current Huntington's news. A useful feature is the research news
section. These mini-articles summarize publications that provide insight into the
mechanisms of HD, but direct links to the primary references are not provided.
Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis (ALS), also know as Lou Gehrig's
disease, is a fatal disease of the motor neurons that begins in middle age.
There are both familial and sporadic forms of the disease. Some types of ALS have
been linked to mutations in the gene for Cu,Zn-binding superoxide dismutase (SOD1).
The World Federation of Neurology's Amyotrophic
Lateral Sclerosis (WFN/AFS) Web site is the outstanding online ALS resource.
The site is designed "to link researchers and clinicians worldwide,"
but is useful for any educated reader. It provides
summaries and reviews of selected journal
articles and books from the medical literature. The
ALS in the News section presents articles
and press releases about ALS research developments and relevant business news. Links to
full texts are provided when available. A particularly nice feature of the WFN/AFS
site is the collection of reports from recent
ALS conferences. The reports contains
abstracts from poster sessions and the full text of selected talks. In addition, the
WFN/AFS site provides updates and results from clinical trials and lists ALS
research centers worldwide. Although the WFN/AFS site is not very sophisticated,
it provides much useful information and is updated weekly.
Alternatively, the Doctor's
Guide to ALS Information and Resources is designed to provide ALS information to a
more general audience. The Medical News
and Alerts section presents current
research news in a summary format. This site has collected several good general
descriptions of the progression and treatment of ALS that are available at other
Web sites. The site also lists
relevant discussion groups for
patient and caregiver support.
Parkinson's Disease
Parkinson's disease (PD) is a disabling brain disorder that generally
affects people over 50 years of age and causes depletion of the neurotransmitter
dopamine. The cause of the disease is unknown; current research suggests that PD
may result from a combination of genetic and environmental factors. The most extensive
general resource for Parkinson's disease is the
Parkinson's Web directed by Ken Bernstein at
Massachusetts General Hospital. This more sophisticated site is extremely well organized and
includes colorful images. It provides good, diagrammed
general descriptions of the disease.
A nice section details Parkinson's
disease treatment and
medications, although references are not provided. The Parkinson's
glossary of Abraham N.
Lieberman is available at the site,
making it easy for nonscientists to read the articles. A great deal of material is devoted
to patient issues and information for caregivers. The site contains a useful
listing of Parkinson's
centers worldwide. Overall, such an enormous
amount of information would benefit from the addition of a search engine.
Parkinson's
Disease: Hope Through Research, from the National Institute of Neurological Disorders and
Stroke, is an online brochure that presents additional discussions of PD diagnosis and
treatment. The National Parkinson Foundation
keeps a good list of current news and events relating to PD, although the home page
describes events primarily in the United States. In addition, the site provides press releases
about new treatments and summaries of relevant research news, although not many primary
references are provided. Unfortunately, no Web site serves as a repository for hard
information and scientific data about Parkinson's disease. The best way to get details
on current PD research is to do a MEDLINE search.
Alzheimer's Disease
Alzheimer's disease (AD) is a progressive degenerative brain disease that
usually occurs in later middle life (over age 65). The disease starts with slight defects
in memory and progresses to neurofibrillary tangles and senile plaques in the brain. Genetic
factors have been identified for several types of AD. The online booklet
Alzheimer's Disease: Unraveling the
Mystery, produced by the National Institute on Aging, provides the best general
description of the disease, discussing possible causes
and treatments. Two nice features are the descriptive images intercalated
throughout the text, and the glossary of terms at the end.
The Alzheimer's
Association home page contains extensive general information about the disease.
The site describes the development of new drugs for AD, presents information about drug
trials, and offers articles on causes and treatments of the disease
from the Association's bulletin
Advances in Alzheimer Research.
For updates on Alzheimer's news, the
site maintains a list of news releases. These are nice summaries of current research news,
although links to the primary references are not included. The site
also provides much information for caregivers and families via online brochures and
articles from the
National Newsletter.
The Alzheimer Web,
designed by David Small at Melbourne University, is "devoted to research on Alzheimer's
disease." This frequently updated site is an excellent collection of AD resources for
researchers. The Q & A section
includes a well-detailed description of the
pathology and treatments for AD with illustrations. You can also view an
animated tour of
an Alzheimer's brain. Small presents a collection of
Hot Papers with personal
comments at the bottom of the Alzheimer Web navigation page. This useful personal touch
deserves more prominence at the site. Small also maintains a list of
Papers of the Week
(on hold at press time but expected to resume in January 1998)
with abstracts from a wide range of biomedical journals, although no links to
the references are provided. An outstanding feature of the site is the
searchable compendium of AD
researchers and research topics. In addition, there is a
complete list of links to
AD research centers and labs that study AD.
The Articles section
features some reprinted articles about AD
and a link to the excellent Alzheimer's bibliography (from 1993 to the present) from
Cambridge Scientific Abstracts' Hot Topics. The
CSA Hot Topics site also contains the best collection of AD links, although summaries are
not provided.
Nothing can replace the attention of a doctor for the diagnosis and treatment
of neurodegenerative disorders. However, the Web is an excellent resource for general
information and current research developments in these diseases. The Web
also provides access to much information about coping with neurodegenerative
diseases, and provides a means to connect with others affected by them.
WebMedLit - tracks neurology references
in 22 medical journals, including the British Medical Journal and the New England
Journal of Medicine, and links directly to the articles and abstracts.
Neuromuscular Disease Center - a
comprehensive technical resource specializing in neuromuscular disorders. Maintained by
Washington University in St. Louis, Missouri.
Neuroscience
for Kids - an extensive and fun resource, with great graphics, for teachers, students,
and neuroscience novices. The site explores the nervous system and discusses the
neuron, neuroscience methodology, and the effects of drugs on the nervous system.
Huntington's disease (HD) is an autosomal dominant disorder that usually
strikes in midlife and causes death in about 15 years. The disease is associated with
increases in the length of a CAG triplet repeat in a gene located on chromosome 4. The
gene for Huntington's disease was isolated in 1993. The definitive starting point for
finding HD information on the Web is the
Huntington's disease site
of Robert Laycock.
Laycock, "a person whose family is touched by Huntington's disease," started
his site in 1995. The resource is a well-organized collection of links to everything
on the Internet having to do with HD. Different sections address topics ranging from
general information and research news to patient care and finding support. Laycock
presents salient descriptions of each resource, and he updates the site weekly. There is
not much hard information here, but the site provides all the
necessary links for finding more resources. 
The 
Amyotrophic lateral sclerosis (ALS), also know as Lou Gehrig's
disease, is a fatal disease of the motor neurons that begins in middle age.
There are both familial and sporadic forms of the disease. Some types of ALS have
been linked to mutations in the gene for Cu,Zn-binding superoxide dismutase (SOD1).
The 
Parkinson's disease (PD) is a disabling brain disorder that generally
affects people over 50 years of age and causes depletion of the neurotransmitter
dopamine. The cause of the disease is unknown; current research suggests that PD
may result from a combination of genetic and environmental factors. The most extensive
general resource for Parkinson's disease is the
Alzheimer's disease (AD) is a progressive degenerative brain disease that
usually occurs in later middle life (over age 65). The disease starts with slight defects
in memory and progresses to neurofibrillary tangles and senile plaques in the brain. Genetic
factors have been identified for several types of AD. The online booklet
The 
