Researcher General Information

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Researchers can work with the Registry in a variety of ways including obtaining data and/or samples from the Registry and requesting help recruiting for their studies and clinical trials.

Researchers must submit an application including information about:

  • who is conducting the study
  • who is sponsoring the study
  • the study objectives and procedures
  • Institutional Review Board (IRB) approved recruitment materials
  • proof of IRB approval (e.g., an IRB approval letter)

Following submission, ATSDR will review the application for completeness and relevance to Registry participants. It will then be evaluated by an external expert panel. ATSDR will not consider any research that does not have IRB approval and an FDA IND or IDE number for an investigational test article, if applicable.

The Registry web portal provides a tool for researchers to track the status of their applications. ATSDR estimates the approval process could take up to 60 business days from the receipt of a complete application.

If your application for data and/or samples is approved, there will be some additional requirements, e.g., signing a Material Transfer Agreement (MTA) you must complete before you can receive the approved data and/or specimens. You will also be required to submit an annual updates about your project. Annual Update Form [PDF – 231 KB]

For questions about how you can work with the Registry, please contact us at 1-877-442-9719 or by email at ALS Research (Monday through Friday; 8am to 5pm ET).