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Georgia ALS Registry: A Feasibility Study

About the Study

Principal Investigator: Michael Benatar, MD, PhD

georgia-alsEfforts 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.

Eligibility Criteria
Funding Agencies

ATSDR-Logo
Agency for Toxic Substances and Disease Registry,
Centers for Disease Control and Prevention

Collaborators
  • 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)
Contact

Principal Investigator

  • Michael Benatar, MD, PhD

Contact Information

  • Email: mbenatar@med.miami.edu
Links
  • National Amyotrophic Lateral Sclerosis (ALS) Registry
Publications
  • 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 ]
Presentations and Lectures

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

Back to Research Studies

Active Research Studies

  • Research Studies (All)
  • Pre-fALS
  • CReATe PGB
  • PRESS-ALS
  • CRiALS Biomarker
  • CRiALS Genetics
  • Neuraltus NP001

Contact Us

By phone:
For familial ALS and general inquiries:
1-888-413-9315
For the CReATe Consortium and related studies:
1-844-837-1031

By email:
fals@miami.edu (For familial ALS inquiries)
projectcreate@miami.edu (For CReATe inquiries)
alsresearch@miami.edu (General inquiries)

Support Our Research

Affiliates

  • CReATe Consortium
  • CReATe Connect
  • The Kessenich Family ALS Center at UM
  • ALS Recovery Fund
  • ALS Association
  • Muscular Dystrophy Association
  • CDC National ALS Registry
  • The Northeastern ALS Consortium
  • Myasthenia Gravis Research Group
Read Our Newsletter

News

  • Biomarker for ALS Disease Progression Identified by the Teams at University of Miami and Flinders University!03/07/2017 - 5:48 pm
  • Brain MedicineDr. Benatar presents promising phase II trial results of Arimoclomol in SOD1 ALS12/09/2016 - 5:02 pm
  • CReATe Consortium Virtual Journal Club12/08/2016 - 3:18 pm
More News
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