Abstract
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. 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. 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. This registry has proven to be a successful model for identifying large numbers of patients with a relatively rare disease an...Continue Reading
References
Apr 1, 1990·Neurology·P B ChristensenN B Jensen
Jun 1, 1995·Brain : a Journal of Neurology·L J HaverkampS H Appel
Jul 1, 1994·Journal of the Neurological Sciences·B R Brooks
Aug 1, 1993·Journal of the Neurological Sciences·F NorrisH Norris
Jun 1, 1993·Journal of Neurology·A M ChancellorC P Warlow
Jan 1, 1997·Epidemiologic Reviews·M J Khoury
Jul 2, 1998·Epidemiology·A HoqueA M Sweeney
Dec 14, 1999·Journal of the Neurological Sciences·J M CedarbaumA Nakanishi
Jun 2, 2001·The New England Journal of Medicine·L P Rowland, N A Shneider
Aug 9, 2001·Community Genetics·L.M. BeskowJ.F. Thrasher
Sep 26, 2001·Neurology·A MoulignierW Rozenbaum
Sep 26, 2001·Neurology·D J MacGowanM Waldron
Apr 20, 2002·Epidemiology·Freya KamelDale P Sandler
Jun 12, 2002·Controlled Clinical Trials·Philip W LavoriJeremy Sugarman
Mar 13, 2003·Clinical Genetics·D Majoor-KrakauerA Hofman
May 8, 2003·European Journal of Epidemiology·C CermelliM Portolani
Sep 25, 2003·Neurology·R D HornerE J Kasarskis
Sep 25, 2003·Neurology·Robert W Haley
May 28, 2004·Ageing Research Reviews·Mark P Mattson
Jan 12, 2005·Neurology·M G WeisskopfA Ascherio
Jan 15, 2005·Neuroepidemiology·Cynthia J CoffmanUNKNOWN VA Cooperative Studies Program Project #500
Jul 23, 2005·Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders : Official Publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases·Edward J KasarskisRichard Kryscio
Aug 25, 2006·Current Neurology and Neuroscience Reports·Ludo Van Den Bosch, Vincent Timmerman
Feb 27, 2007·Contemporary Clinical Trials·Lisa DiMartinoUNKNOWN National Registry of Veterans with ALS
Jul 21, 2007·American Journal of Epidemiology·Honglei ChenFreya Kamel
Aug 3, 2007·The New England Journal of Medicine·Travis DunckleyDietrich A Stephan
Citations
Apr 22, 2010·American Journal of Epidemiology·Fang FangFreya Kamel
Feb 6, 2009·Human Molecular Genetics·Adriano ChiòBryan J Traynor
Oct 26, 2012·Neuroepidemiology·Michael WittieMichael Benatar
Apr 4, 2012·PloS One·Lydia Coulter KweeMichael A Hauser
Mar 1, 2016·Environment International·John D BeardFreya Kamel
Mar 9, 2010·Revue neurologique·A DrouetV Thevenin-Garron
Feb 5, 2010·Journal of the Neurological Sciences·Silke SchmidtEugene Z Oddone
Jun 25, 2008·Neurotoxicology·Marie Lynn MirandaRonnie D Horner
Oct 19, 2011·Muscle & Nerve·David E SticklerJames W Hardin
Apr 18, 2016·Neurotoxicology·Tracy L PetersFreya Kamel
Jun 26, 2013·Free Radical Biology & Medicine·Emanuele D'AmicoHiroshi Mitsumoto
Nov 5, 2014·Epidemiologic Reviews·John D Beard, Freya Kamel
Nov 20, 2009·Amyotrophic Lateral Sclerosis : Official Publication of the World Federation of Neurology Research Group on Motor Neuron Diseases·Daniel M PastulaRichard S Bedlack
Aug 5, 2016·MMWR. Surveillance Summaries : Morbidity and Mortality Weekly Report. Surveillance Summaries·Paul MehtaKevin Horton
Apr 29, 2016·PloS One·Leah BryanD Kevin Horton
Oct 12, 2017·American Journal of Epidemiology·Fang FangFreya Kamel
Oct 13, 2017·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Wendy E KayePaul Mehta
May 28, 2019·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Jaime RaymondKevin Horton
Aug 27, 2013·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Christopher B BradyNeil W Kowall
Mar 7, 2014·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Wendy E KayeJennifer Wu
Jun 29, 2018·Neurology·Jonathan R WolpawRobert L Ruff
Oct 11, 2017·PloS One·John D BeardFreya Kamel
Sep 6, 2020·European Journal of Neurology : the Official Journal of the European Federation of Neurological Societies·F HenningB Marin
Jan 21, 2009·Amyotrophic Lateral Sclerosis : Official Publication of the World Federation of Neurology Research Group on Motor Neuron Diseases·Natan KhishchenkoRichard S Bedlack
Feb 6, 2017·American Journal of Epidemiology·Daniela MariosaFreya Kamel
Sep 17, 2010·Amyotrophic Lateral Sclerosis : Official Publication of the World Federation of Neurology Research Group on Motor Neuron Diseases·Michael BenatarKevin Ward
Mar 9, 2021·Frontiers in Public Health·Meghan C O'LearyKellie J Sims
Apr 27, 2021·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Jaime RaymondKevin Horton