The National Amyotrophic Lateral Sclerosis (ALS) Registry is identifying cases of ALS throughout the United States. Although many cases are identified through data reported by National databases such as those from Medicare, Medicaid, the Veterans Health Administration, and the Veterans Benefits Administration, others are identified when people with ALS actively enroll in the National ALS Registry via an on-line self-reporting web portal, which can be found at www.cdc.gov/als.
The web portal is an important element of the National ALS Registry because, in addition to identifying cases of ALS, it also collects risk factor information about persons with ALS that is not available through the national databases. This information may allow researchers to learn more about the disease as they seek to find the cause, treatment, and cure for ALS. Therefore, even if a person with ALS already receives Medicare, Medicaid, or Veterans’ benefits, it still is important that they enroll in the registry via the online web portal and complete the surveys found on the site.
It also is important that people complete each survey on the site, even ones that may not appear to be relevant, such as military history. Researchers not only want to know if someone has served in the military, but also if they have not served. By participating in the surveys, persons with ALS provide researchers with important information that may be used to improve our understanding of this disease.
Persons with ALS who wish to enroll in the registry and complete the online risk factor surveys may do so at www.cdc.goc/als. To complete the surveys, persons with ALS should read each survey question carefully and answer to the best of their knowledge. The process to answer questions may come in several formats:
Each time a person with ALS goes to the next page of a survey the answers to the previous page are saved.
Respondents have the option to save and quit a survey at any time. If a person decides to save and quit a survey, their responses are saved and they can finish the survey later. At the end of each survey, persons with ALS are given the option to review and change their answers. They also can print a copy of their answers. Once they submit their answers, they will not be able to change or print them later.
There is no time limit to take surveys. However, if a person with ALS stays logged in and does not work on the survey, an alert will display. They will be informed that their session will time out if no further activity takes place.People do not need to complete all of the surveys at one time. For example, they may complete one or two surveys and then return later to complete other surveys.
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