ALS Research Notification
Researcher Quick Start Guide
The National ALS Registry contains the largest group data on Persons with ALS (PALS) in the United States. One of the purposes of the Registry, as defined by Congress, “is to facilitate research.” A number of researchers outside of ATSDR would like to contact PALS enrolled in the Registry to inform them about their studies; however, the Registry never releases the names or identities of PALS.
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 must send ATSDR information about their study. They must also demonstrate to ATSDR that an Institutional Review Board (IRB) has approved their study. If ATSDR approves the request, ATSDR will email eligible PALS about the study. PALS will have the option of whether or not to contact the researcher about participating in the study. All approved studies will have study title, institution, and principal investigator names posted to this web page.
ATSDR has updated the Registry website 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.
Persons with ALS (PALS) Information
To see a listing of research studies and clinical trials that have used the National ALS Registry for patient recruitment purposes, please click here ALS Research Notification for Clinical Trials and Studies.