Principal Investigator: Michael Benatar, MD, PhD
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 two manuscripts have already been published.
- Kevin Ward, PhD (Emory University)
- Lorene Nelson, PhD (Stanford University)
- Michael Wittie, MPH (Centers for Disease Control and Prevention)
- Oleg Muravov, MD, PhD (Centers for Disease Control and Prevention)
- Wendy Kaye, PhD (Centers for Disease Control and Prevention)
- Wittie M, Nelson LM, Ward K, Benatar M. “Utility of Capture-Recapture Methodology to Assess Completeness of Amyotrophic Lateral Sclerosis Case Ascertainment.” Neuroepidemiology 40.2 (2012): 133-41. [ PubMed Link ]
- 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. [ PubMed Link ]
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
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