ALS Researcher Request

ATSDR has developed an online tool for researchers to submit application for the following requests:

  • Recruitment Assistance/Research Notification (Learn more about it here.)
  • National ALS Biorepository Sample Requests
    • Requesting samples from our partner and other resources (Learn more about it here.)
  • Epidemiological/Survey Data Requests (Learn more about it here.)

Each request may require different parts of the application and other documents. See below to see which research application you’d need to start the process:

ALS Research Data
Research Need Forms* Once submitted and/or approved
Main Research
Part A Part B Part C Part D How to Update
ALS Recruitment Assistance/Research Notification X X Link
Premortem samples with or without survey data X X Email
Postmortem samples with or without survey data X X Email
Both premortem and postmortem samples with or without survey data X X X Email
Epidemiological/Survey data only X X Email

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

Other required documents include:

  • Cover letter with a brief overview of the project, highlighting the importance of the research proposal.
  • PI CV or Biosketch.
  • Full study protocol, including consent form and all survey instruments.
  • Confirmation of IRB approval of full protocol and informational materials.

To update Recruitment Assistance/Research Notification application, email us at or use its update link

To update Sample Request application, email the biorepository team at

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. Once submitted, ATSDR will review the application for completeness, sample availability, and relevance to ALS research. It will then be evaluated by an internal/external scientific panel. ATSDR estimates the approval process could take up to 60 business days from the receipt of a complete application.

If your application for 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