ShareCompartir
Announcements: ALS Awareness Month — May 2014
May is Amyotrophic Lateral Sclerosis (ALS) Awareness Month. ALS, also known as Lou Gehrig's disease, is a progressive, fatal, neurodegenerative disorder of the upper and lower motor neurons. The etiology of ALS is not well understood, and currently there is no cure. Persons with ALS usually die within 2–5 years of diagnosis.
In October 2010, the Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Registry (http://www.cdc.gov/als) to collect and analyze data regarding persons with ALS in the United States. The goals are to determine the incidence and prevalence of ALS, characterize the demographics of those living with ALS, and examine the potential risk factors for the disease. The registry uses data from existing national databases, including the Centers for Medicare and Medicaid Services and the U.S. Department of Veterans Affairs, as well as information provided by persons with ALS through the secure online web portal. Registrants can also take brief online surveys regarding potential risk factors for the disease.
ATSDR is collaborating with the ALS Association (http://www.alsa.org), Muscular Dystrophy Association (http://www.als-mda.org), Les Turner Foundation (http://www.lesturnerals.org), and other organizations to make all persons with ALS and their families aware of the opportunity to register in the National ALS Registry. Additional features have been added to enhance the registry for patients and researchers, including state and metropolitan area–based ALS surveillance to assist in evaluating the completeness of the registry, a research notification system to inform persons with ALS about new research studies, a biorepository study to evaluate the feasibility of collecting biospecimens from enrollees, and mobile apps to help find the nearest ALS clinics and support groups.
Use of trade names and commercial sources is for identification only and does not imply endorsement by the U.S. Department of
Health and Human Services.
References to non-CDC sites on the Internet are
provided as a service to MMWR readers and do not constitute or imply
endorsement of these organizations or their programs by CDC or the U.S.
Department of Health and Human Services. CDC is not responsible for the content
of pages found at these sites. URL addresses listed in MMWR were current as of
the date of publication.
All MMWR HTML versions of articles are electronic conversions from typeset documents.
This conversion might result in character translation or format errors in the HTML version.
Users are referred to the electronic PDF version (http://www.cdc.gov/mmwr)
and/or the original MMWR paper copy for printable versions of official text, figures, and tables.
An original paper copy of this issue can be obtained from the Superintendent of Documents, U.S.
Government Printing Office (GPO), Washington, DC 20402-9371;
telephone: (202) 512-1800. Contact GPO for current prices.
**Questions or messages regarding errors in formatting should be addressed to
mmwrq@cdc.gov.
