What to know
- Learn about the different ways to request data, samples, or assistance from the National ALS Registry and the National ALS Biorepository. We have different application forms for these requests, which will undergo an evaluation process for approval.
ALS Research Requests
ATSDR has developed an online tool for researchers to submit application for the following requests:
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:
| Research Need | Main Research Application | Form Part A | Form Part B | Form Part C | Form Part D | Once submitted and/or approved How to Update |
|---|---|---|---|---|---|---|
| ALS Recruitment Assistance/Research Notification | X | X | - | - | - | Link |
| Premortem samples with or without survey data | X | - | X | - | - | |
| Postmortem samples with or without survey data | X | - | - | X | - | |
| Both premortem and postmortem samples with or without survey data | X | - | X | X | - | |
| Epidemiological/Survey data only | X | - | - | - | X |
*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.
How to Apply
To update Recruitment Assistance/Research Notification application, email us at alsresearch@cdc.gov or use its update link
To update Sample Request application, email the biorepository team at alsbioresearch@mcking.com
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