The ALS Association

The National ALS Registry Next Steps

Strengthening the Search for a Treatment and Cure

The National ALS Registry is collecting vital risk factor information about ALS that will help identify the cause, treatment, and cure for Lou Gehrig’s disease.   Enrollment is underway nationwide and the registry is collecting the following information about ALS cases:

  • Demographic Information (e.g., age, race, gender etc.)
  • Occupational History
  • Military History
  • Lifestyle (e.g., alcohol, smoking
  • Physical Activity
  • Family History
  • Disease Progression (update twice a year)

Strengthening the Registry

The Agency for Toxic Substances and Disease Registry (ATSDR) has proposed to strengthen the registry by collecting additional vital information that may help to accelerate the ability of this research project to meet the goals established by Congress and the needs of persons with ALS.

New questionnaires that may be added to the registry include:

  • Caffeine Use
  • Clinical Care
  • Head Trauma and Electrical Shock
  • Health Insurance
  • Open Ended Questions, allowing people with ALS to enter information not already addressed by the registry
  • Reproductive History (women)
  • Residential History and Toxic Exposures (hobbies, employment)

Clinical Trials:
This new tool informs patients about trials for which they may be eligible and how to contact the researchers conducting the trials.

Care Service Locator:
This tool helps persons with ALS identify services in their community, including ALS Association Chapters, Centers, and Clinics.

State and Metropolitan Area Projects:
These projects are designed to evaluate the completeness of the National ALS Registry and identify gaps where the registry may be missing ALS cases, such as in rural and urban underserved areas and in minority populations.  Data collected by the projects will be compared to the national data so that researchers can identify gaps and take steps to fill those gaps on a nationwide basis.

Projects are underway in:

  • States: Florida; New Jersey; Texas
  • Metro Areas: Atlanta; Baltimore; Chicago; Detroit; Las Vegas; Los Angeles; Philadelphia; San Francisco
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