Researcher Requests Information

Research Notification Requests

ATSDR has developed an online research notification tool that allows researchers to recruit Registry-enrolled persons with ALS (PALS) to take part in new research studies and clinical trials. To recruit PALS, researchers need to complete and upload an application, link to application. Once the application has been reviewed and approved, ATSDR will email PALS who have consented to receive notifications with your recruitment information, study details, and contact information. Please note, ATSDR will not provide you with any contact information for PALS. Once ATSDR emails PALS with your recruitment information, it will be up to them to contact you to participate in the research study. To see a list of researchers who have used the Registry to recruit PALS for research studies, click here.

Benefits of the research notification tool for researchers include:

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

For additional questions, please contact us at alsresearch@cdc.gov.

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 alsresearch@cdc.gov.

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