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NINDS Amyotrophic Lateral Sclerosis (ALS) Information Page

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In July 2012, the DSMB for the NINDS-sponsored clinical trial of ceftriaxone in ALS recommended that based on existing data the trial be stopped because the study was unlikely to reach the pre-determined efficacy criteria. The NINDS leadership concurred. Pre-clinical research identified ceftriaxone as a promising treatment for ALS therefore it was important for people with ALS to find out if the drug could be beneficial in ameliorating the disease. The study used a novel seamless adaptive design. Final analysis and presentation of the results will occur after completion of site monitoring and database lock. The important contributions of patients, their families and the hard work of the investigators and their teams made it possible to implement the trial. While all had hoped for a more positive result, the trial has moved ALS research forward.

Synonym(s):   Lou Gehrig's Disease
Condensed from Amyotrophic Lateral Sclerosis (ALS) Fact Sheet

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What is Amyotrophic Lateral Sclerosis (ALS)?

Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease or classical motor neuron disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles.  In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away, and twitch. Eventually the ability of the brain to start and control voluntary movement is lost.  Symptoms are usually first noticed in the arms and hands, legs, or swallowing muscles.  Muscle weakness and atrophy occur on both sides of the body.  Individuals with ALS lose their strength and the ability to move their arms and legs, and to hold the body upright. When muscles in the diaphragm and chest wall fail to function properly, individuals lose the ability to breathe without ventilatory support.  The disease does not affect a person's ability to see, smell, taste, hear, or recognize touch.  Although the disease does not usually impair a person's mind or personality, several recent studies suggest that some people with ALS may develop cognitive problems involving word fluency, decision-making, and memory.  The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.

Is there any treatment?

No cure has yet been found for ALS. However, the drug riluzole--the only prescribed drug approved by the Food and Drug Administration to treat ALS--prolongs life by 2-3 months but does not relieve symptoms.  Other treatments are designed to relieve symptoms and improve the quality of life for people with ALS.  Drugs are available to help individuals with spasticity, pain, panic attacks, and depression.  Physical therapy, occupational therapy, and rehabilitation may help to prevent joint immobility and slow muscle weakness and atrophy.  Individuals with ALS may eventually consider forms of mechanical ventilation (respirators). 

What is the prognosis?

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Individuals have increasing problems with moving, swallowing, and speaking or forming words. Eventually people with ALS will not be able to stand or walk, get in or out of bed on their own, or use their hands and arms. In later stages of the disease, individuals have difficulty breathing as the muscles of the respiratory system weaken. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10 percent of those individuals with ALS survive for 10 or more years.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research in its laboratories at the National Institutes of Health (NIH) and also supports additional research through grants to major medical institutions across the country. The goals of this research are to find the cause or causes of ALS, understand the mechanisms involved in the progression of the disease, and develop effective treatments.

National ALS Registry

Both the NINDS and the Centers of Disease Control and Prevention (CDC) are committed to studies of disease patterns or risk factors among persons with ALS in order to better understand the causes of ALS, the mechanisms involved in the progression of the disease, and to develop effective treatments. In keeping with this goal, the CDC has launched the National ALS Registry, a program to collect, manage and analyze data about persons with ALS. The Registry includes data from national databases as well as de-identified information provided by persons with ALS. Persons living with ALS who choose to participate can add their information to the Registry by clicking the button below.

The National Amyotrophic Lateral Sclerosis (ALS) Registry — www.cdc.gov/als — (800) 232-4637

NIH Patient Recruitment for Amyotrophic Lateral Sclerosis Clinical Trials

Organizations

Column1 Column2
ALS Association
1275 K Street, N.W.
Suite 1050
Washington, DC   20005
advocacy@alsa-national.org
http://www.alsa.org
Tel: 202-407-8580
Fax: 202-289-6801

Les Turner ALS Foundation
5550 W. Touhy Avenue
Suite 302
Skokie, IL   60077-3254
info@lesturnerals.org
http://www.lesturnerals.org
Tel: 888-ALS-1107 847-679-3311
Fax: 847-679-9109

Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, AZ   85718-3208
mda@mdausa.org
http://www.mda.org
Tel: 520-529-2000 800-572-1717
Fax: 520-529-5300

Project ALS
3960 Broadway
Suite 420
New York, NY   10032
info@projectals.org
http://www.projectals.org
Tel: 212-420-7382 800-603-0270
Fax: 212-420-7387

ALS Therapy Development Institute
300 Technology Square
Suite 400
Cambridge, MA   02139
info@als.net
http://www.als.net
Tel: 617-441-7200
Fax: 617-441-7299

Prize4Life
P.O. Box 425783
Cambridge, MA   02142
contact@prize4life.org
http://www.prize4life.org
Tel: 617-500-7527

Related NINDS Publications and Information
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Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892



NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Last updated July 30, 2014