Researcher Requests Information

Research Notification Requests

ATSDR has developed a research notification tool that will allow persons with ALS (PALS) enrolled in the National ALS Registry to find out about new studies and clinical trials for which they may be eligible. Email notification will be sent to PALS who have agreed to receive notifications about related studies. ATSDR will email the research notifications and study details to PALS based upon the eligibility criteria defined for each study.

Benefits of the research notification tool for researchers include:

  • shorter recruitment time
  • increased study sample size
  • increased geographic diversity
  • free service

Click here to view current institutions who have used this system. For additional questions, please contact us at

Researcher Biorepository Requests

ATSDR has developed an online tool for researchers to request samples from the National ALS Biorepository. The samples come from PALS enrolled in the National ALS Registry and, when available, can be linked to epidemiological data (e.g., smoking history, residential history, occupational history, and history of military service) collected by the Registry. ATSDR would like to invite researchers to apply for samples and data collected from PALS. To read the latest approved studies using the National ALS Biorepository samples, click here.

In addition to the standard review, ATSDR will also review the application for sample availability and appropriateness of sample use. For more information on the types of samples available, please review Part B and C of the application form.

Due to the complex variations in specimen and epidemiologic data availability, we highly encourage you to contact one of our registry specialists to discuss your data and specimen needs before proposing any studies using the Registry. If you are submitting a grant proposal, please contact the Extramural Research Program Office (ERPO) for guidance. If you are submitting a grant proposal for another federal agency, please contact the National ALS Biorepository at the number below.

Click here to view inventory for pre and post mortem samples currently available

For more information about biological samples and tissues available please call the National ALS Biorepository at 1-855-874-6912. (Monday through Friday 8:30am to 5pm ET).

Researcher 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. For more information on the types of data collected by the Registry, please review Part D of the application form. Prior to submitting a data request, please contact the Registry in order to determine which data are available.

Click here to view current institutions who have requested data. For additional questions, please contact us at

Submit Application

To complete and submit your application materials,

please click the link below

Update Application

To Update application,

please click the link below.

Page last reviewed: April 11, 2017