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

Forms required to request data from the National ALS Registry

ALS Research Notification Clinical Trials Studies
Research Need Forms* Once submitted and/or approved
Main Research
Part A Part B Part C Part D How to Update
Epidemiological/Survey data only X X Email

*Each application form lists details on required information, sample types, epidemiological survey types

For any questions regarding data requests, please contact the National ALS Registry at alsresearch@cdc.gov .