The identification of nongenetic risk factors can help scientists better understand and determine the causes of ALS. The work to uncover these factors is being facilitated by the National ALS Registry, funded by the federal government and headquartered in Atlanta at the Agency for Toxic Substances and Disease Registry (ATSDR).
The Registry was put in place with the goals of determining:
- how many new cases of ALS are identified each year in the U.S. (incidence);
- how many people are living with ALS at a given time (prevalence); and
- the demographics (statistical data such as age, income and education) of people who get ALS.
This information will help scientists form a better understanding of risk factors for the disease, such as environmental and occupational factors.
One way people with ALS are helping advance the Registry's goal of identifying ALS risk factors is by completing Registry surveys that contain questions about demographics and lifestyle factors.
The current list of risk factor questionnaires includes:
- demographic information;
- family history;
- military history;
- occupational history;
- physical activity; and
- smoking and alcohol use.
It's important that people with ALS complete all of the surveys, including those that they think may not pertain to them. (For example, the survey on smoking should be completed even if the registrant has never smoked.) When both smokers and nonsmokers complete the questionnaire about smoking, it increases the accuracy in determining the percent of people with ALS who smoke versus those who do not smoke. The smoking rate among people with ALS can then be compared to the rate in the general population — important information for researchers working to better understand ALS.
Each of the surveys should be completed only once, except the Disease Progression Survey, which should be completed twice a year.
However, Registry members should check back periodically to see if new questionnaires have been added. Registry officials currently are in the process of developing several new risk factor surveys covering:
- lifetime residential history;
- residential pesticide exposures;
- lifetime toxicant exposures via occupations and hobbies;
- trauma (traumatic brain injury, electrical shocks);
- caffeine consumption;
- reproductive history (women); and
- clinical signs and symptoms of ALS.
In addition, a survey with open-ended comment fields is being developed so that people with ALS can say what they think might have led to their ALS.
Registration with the National ALS Registry is a brief process that can be done through the registry Web portal.
For more information, visit the National ALS Registry website, where you can find: the National ALS Registry Fact Sheet; answers to Frequently Asked Questions; a Quick Start Guide for people with ALS; information about how personal information is protected; and more.