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Table of Contents
Vol. 30, No. 3, 2008
Issue release date: May 2008
Section title: Original Paper
Neuroepidemiology 2008;30:180–190
(DOI:10.1159/000126910)

The National Registry of Veterans with Amyotrophic Lateral Sclerosis

Allen K.D.a, c · Kasarskis E.J.e · Bedlack R.S.b, c · Rozear M.P.b, c · Morgenlander J.C.b, c · Sabet A.g · Sams L.f · Lindquist J.H.a · Harrelson M.L.a · Coffman C.J.a, d · Oddone E.Z.a, c
aEpidemiology Research and Information Center and bNeurology Service, Durham VAMC, cDepartment of Medicine, Duke University Medical Center, dDepartment of Biostatistics and Bioinformatics, Duke University, Durham, N.C., eLexington VAMC and University of Kentucky Medical Center, Lexington, Ky., and fCincinnati VAMC and University of Cincinnati Medical Center, Cincinnati, Ohio, USA; gNeuroscience Department, Gold Coast Hospital, Southport, Qld., Australia

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Article / Publication Details

First-Page Preview
Abstract of Original Paper

Received: November 28, 2007
Accepted: January 23, 2008
Published online: April 18, 2008
Issue release date: May 2008

Number of Print Pages: 11
Number of Figures: 4
Number of Tables: 2

ISSN: 0251-5350 (Print)
eISSN: 1423-0208 (Online)

For additional information: http://www.karger.com/NED

Abstract

Background: The Department of Veterans Affairs (VA) Cooperative Studies Program has established a National Registry of Veterans with Amyotrophic Lateral Sclerosis (ALS). This article describes the objectives, methods, and sample involved in the registry. Methods: United States military veterans with ALS were identified through national VA electronic medical record databases and nationwide publicity efforts for an enrollment period of 4 1/2 years. Diagnoses were confirmed by medical record reviews. Registrants were asked to participate in a DNA bank. Follow-up telephone interviews are conducted every 6 months to track participants’ health status. Results: As of September 30, 2007, 2,400 veterans had consented to participate in the registry, 2,068 were included after medical record review, 995 were still living and actively participating, and 1,573 consented to participate in the DNA bank. 979 participants had been enrolled in the registry for at least 1 year, 497 for at least 2 years, and 205 for at least 3 years. Fourteen studies have been approved to use registry data for epidemiological, observational, and interventional protocols. Conclusion: This registry has proven to be a successful model for identifying large numbers of patients with a relatively rare disease and enrolling them into multiple studies, including genetic protocols.

© 2008 S. Karger AG, Basel


Article / Publication Details

First-Page Preview
Abstract of Original Paper

Received: November 28, 2007
Accepted: January 23, 2008
Published online: April 18, 2008
Issue release date: May 2008

Number of Print Pages: 11
Number of Figures: 4
Number of Tables: 2

ISSN: 0251-5350 (Print)
eISSN: 1423-0208 (Online)

For additional information: http://www.karger.com/NED


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