At a glance
Epidemiological data come from participants enrolled in the Registry who have completed the risk factor surveys. Deidentified data may be requested alone, or as a supplement to the matched biospecimen from the National ALS Biorepository.
Epidemiological/Survey Data Requests
Researchers may request Registry data for their own research studies. These data are collected in the risk factor modules. Some data requested may not be available because, for example, it could be used in conjunction with other data to identify a participant. The following data sets are available:
- Demographics
- Occupational History
- Military History
- Smoking/Alcohol History
- Physical Activity
- Disease Progression (ALSFRS-R)
- Family History of Neurological Diseases
- Clinical Data (e.g., devices used, body onset)
- Lifetime Residential History
- Lifetime Occupational History
- Residential Pesticide Use
- Hobbies with Toxicant Exposures
- Caffeine Consumption
- Reproductive History (women)
- Health Insurance Status
- Trauma History
For any questions regarding data requests, please contact the National ALS Registry at alsresearch@cdc.gov .
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