Abstract Details

Title How the National Amyotrophic Lateral Sclerosis (ALS) Registry Can Help with Your Research

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P1 - Poster Session 1 (5:30 PM-6:30 PM)

Poster/Presentation
Number 12-022

Objective Develop mechanisms within the National ALS Registry to facilitate ALS research.

Background The National ALS Registry, maintained by the Agency for Toxic Substances and Disease Registry (ATSDR), is the largest database of persons with ALS in the United States. One purpose of the Registry, as defined by Congress, “is to facilitate research.” The Registry enrolls person with ALS, collects epidemiological data and biological samples for the National ALS Biorepository. The purpose of the Biorepository is to expand ALS research in areas such as genetics, environmental exposures, and disease progression. The Registry can assist with recruiting persons with ALS into studies. The Registry can also provide de-identified self-reported epidemiological data and/or biological samples for a subset of persons in the Registry.

Design/Methods

ATSDR developed mechanisms that allow eligible persons with ALS to be informed about studies, self-report epidemiologic data, and provide specimens to the Biorepository. Researchers can apply to receive data from the Registry and/or samples from the Biorepository as well as have recruitment emails sent for their studies. Researchers who want to use one of these mechanisms can submit an application with information about the study and provide documentation of IRB approval.

Existing and new Registry enrollees are eligible to be notified about studies and provide samples to the Biorepository. Registrants who want to take part must consent to be notified about studies and receive information about the Biorepository. ATSDR emails eligible registrants about approved research studies and they have to contact the researcher directly if they want to take part because ATSDR does not disclose identifiable personal information of participants.

Results Multiple studies using these mechanisms will be described.

Conclusions These mechanisms provide researchers access to a large national group of ALS cases for their research including eligible persons with ALS who may not have participated in research or provided biological samples.

Authors/Disclosures
Wendy E. Kaye, PhD (McKing Consulting Corp) PRESENTER	Dr. Kaye has received personal compensation for serving as an employee of McKing Consulting Corporation. Dr. Kaye has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Association for the Protection of Human Research Participants.
Laurie Wagner (McKing Consulting Corporation)	Laurie Wagner has nothing to disclose.
Jaime Raymond	Jaime Raymond has nothing to disclose.
Paul Mehta	Paul Mehta has nothing to disclose.
Theodore Larson	Theodore Larson has nothing to disclose.

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