Title

Georgia ALS Registry: A Feasibility Study

Short name

Georgia ALS Registry

Principal Investigator

Michael Benatar, MD, PhD

Site-PI

Summary

Efforts are underway to develop a national ALS registry within the United States. In preparation for this national effort, we undertook a pilot study in the state of Georgia. The goal of this study was to determine the usefulness of existing data from sources such as Medicare and the Veterans Administration, for correctly identifying patients with ALS and related motor neuron diseases. This study has been completed and we are in the process of preparing two manuscripts for publication.

Eligibility criteria

Funding agency

Agency for Toxic Substances and Disease Registry, Centers for Disease Control and Prevention

Collaborators

Wendy Kaye, PhD (Centers for Disease Control and Prevention)
Oleg Muravov, MD, PhD (Centers for Disease Control and Prevention)
Lorene Nelson, PhD (Stanford University)
Kevin Ward, PhD (Emory University)
Michael Wittie, MPH (Centers for Disease Control and Prevention)

Project manager

Sharon Usher, RN

Contact information

Link(s)

Publications

Benatar M, Wuu J, Usher S, Ward K. Preparing for a U.S. national ALS registry: Lessons from a pilot project in the state of Georgia. Amyotroph Lateral Scler. 2011 Mar;12(2):130-5. Epub 2010 Sep 15.

Usher S, Ward K, Wuu J, Muravov O, Kaye W, Benatar M. Georgia ALS Registry: A Feasibility Study. Poster presentation by Sharon Usher at the 20th International Symposium on ALS/MND, Berlin, December 2009

Wittie M, Ward K, Muravov O, Kaye W, Benatar M. Use of capture-recapture methods to estimate ALS prevalence in Georgia. Poster presentation by Michael Wittie at the 61st Annual Meeting of the American Academy of Neurology, Seattle, May 2009