• ATSDR

ALS Research Notification

Researcher Quick Start Guide

The National ALS Registry is the largest group of persons with ALS (PALS) in the United States. One of the purposes of the Registry, as defined by Congress, “is to facilitate research.” Researchers outside of ATSDR would like to contact PALS in the Registry about studies, but the Registry never releases PALS’ names to anyone.

To allow interested PALS to be able to hear from researchers ATSDR has developed a system that will allow enrolled PALS to find out about new studies. Researchers, who want to contact PALS in the Registry, will send ATSDR information about their study. They must also show ATSDR that an Institutional Review Board has approved the study. If ATSDR approves the request, ATSDR will email eligible PALS about the study. PALS will have to contact the researcher if they want to be in the study.

ATSDR has updated the Registry Web site so that PALS can select if they wish to be told about research trials. ATSDR will only send notices to those who have agreed to be contacted about research. PALS can receive updates through the registry, social media websites, or their advocacy group.