What to know
National ALS Registry Research Notification Mechanism connects participants to researchers seeking recruitment assistance. Email notifications of current studies seeking participants are sent out to persons living with ALS who have enrolled in the Registry web portal.
National ALS Registry Research Notification
ATSDR has developed a research notification tool that allows persons living with ALS enrolled in the National ALS Registry to take part in new research studies and clinical trials for which they may be eligible. Email notification will be sent out to persons living with ALS who have agreed to receive notifications about related studies. Once the research application has been reviewed and approved, ATSDR will email the Registry enrollees with recruitment information, study details, and contact information.
Benefits of the research notification tool for researchers include:
- shorter recruitment time
- increased study sample size
- increased geographic diversity
- free service
| 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 |
*Each application form lists details on required information, sample types, epidemiological survey types
Please note, ATSDR will not provide the researcher with any contact information of persons living with ALS. Once ATSDR emails the Registry enrollees with research recruitment information, it will be up to them to contact the researcher to participate in the study.
Application
How to Apply
To see a list of researchers who have used the Registry to recruit persons living with ALS for research studies, click here.
For additional questions, please contact us at alsresearch@cdc.gov.