CDC - Amyotrophic Lateral Sclerosis (ALS)

CDC - Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic Lateral Sclerosis: National Registry, Biorepository & Genetics

Prevalence of amyotrophic lateral sclerosis — United States, 2010–2011,  [PDF 575.05 KB] Agency for Toxic Substances and Disease Registry, MMWR, July 25, 2014

National Amyotrophic Lateral Sclerosis (ALS) registryfrom the Agency for Toxic Substances and Disease Registry

What causes ALS?  Although no cause has been found for most cases of ALS, a number of inherited factors have been found to cause familial ALS

National ALS Biorepository.  Little is known about the role genetics play in ALS. In order to find out more, researchers need biological samples like blood or tissue from persons living with ALS . ATSDR is coordinating a feasibility study to find the best way to collect and store these samples.

Genetics and ALS: Find out more information from the NIH Genetics Home Reference- An estimated 5 to 10 percent of ALS is familial and caused by mutations in one of several genes

Keeping up with genetic discoveries in amyotrophic lateral sclerosis: ALSGene database 
Lill CM et al. Amyotroph Lateral Scler. 2011 Jul;12(4):238-49.  

Search the ALSGene database for latest genes associated with ALS

Did you know there are 194 genes reported in relation to risk and complications of ALS, including 36 genomewide association studies? To find out more, visit the HuGE Navigator

Join the Registry|Login

Note:

• Persons with ALS (PALS) who are 18 years or older, U.S. Citizens or Legal Residents of the U.S. are eligible for either a PALS Account or a Public Account.
• If you are a person with ALS who is not a U.S. Citizen or Legal Resident of the U.S., you may only register for a Public Account.
• National ALS Registry Consent Form 

Persons with ALS (PALS) Account This account is designed for persons with ALS only. This account allows persons with ALS to complete ALS related surveys and update account information. Surveys are brief and participants can do them all at once or over a period of time. Information collected from these surveys could possibly help persons with ALS in the future by allowing health care providers, researchers, and other interest groups better understand who gets ALS. The surveys may also be used to promote research on improving disease management and developing standards of care for ALS.

Public Account The Public Account is designed for health care providers, researchers, family members of persons with ALS, and other persons interested in learning more about ALS. Public Account users will be able to view resource materials about ALS and the National ALS Registry.