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. (c) 2008 S. Karger AG, Basel
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. (c) 2008 S. Karger AG, Basel
Authors: Daniela Mariosa; John D Beard; David M Umbach; Rino Bellocco; Jean Keller; Tracy L Peters; Kelli D Allen; Weimin Ye; Dale P Sandler; Silke Schmidt; Fang Fang; Freya Kamel Journal: Am J Epidemiol Date: 2017-03-01 Impact factor: 4.897
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Authors: Fang Fang; Lydia C Kwee; Kelli D Allen; David M Umbach; Weimin Ye; Mary Watson; Jean Keller; Eugene Z Oddone; Dale P Sandler; Silke Schmidt; Freya Kamel Journal: Am J Epidemiol Date: 2010-04-20 Impact factor: 4.897
Authors: Fang Fang; Tracy L Peters; John D Beard; David M Umbach; Jean Keller; Daniela Mariosa; Kelli D Allen; Weimin Ye; Dale P Sandler; Silke Schmidt; Freya Kamel Journal: Am J Epidemiol Date: 2017-11-01 Impact factor: 4.897
Authors: Adriano Chiò; Jennifer C Schymick; Gabriella Restagno; Sonja W Scholz; Federica Lombardo; Shiao-Lin Lai; Gabriele Mora; Hon-Chung Fung; Angela Britton; Sampath Arepalli; J Raphael Gibbs; Michael Nalls; Stephen Berger; Lydia Coulter Kwee; Eugene Z Oddone; Jinhui Ding; Cynthia Crews; Ian Rafferty; Nicole Washecka; Dena Hernandez; Luigi Ferrucci; Stefania Bandinelli; Jack Guralnik; Fabio Macciardi; Federica Torri; Sara Lupoli; Stephen J Chanock; Gilles Thomas; David J Hunter; Christian Gieger; H Erich Wichmann; Andrea Calvo; Roberto Mutani; Stefania Battistini; Fabio Giannini; Claudia Caponnetto; Giovanni Luigi Mancardi; Vincenzo La Bella; Francesca Valentino; Maria Rosaria Monsurrò; Gioacchino Tedeschi; Kalliopi Marinou; Mario Sabatelli; Amelia Conte; Jessica Mandrioli; Patrizia Sola; Fabrizio Salvi; Ilaria Bartolomei; Gabriele Siciliano; Cecilia Carlesi; Richard W Orrell; Kevin Talbot; Zachary Simmons; James Connor; Erik P Pioro; Travis Dunkley; Dietrich A Stephan; Dalia Kasperaviciute; Elizabeth M Fisher; Sibylle Jabonka; Michael Sendtner; Marcus Beck; Lucie Bruijn; Jeffrey Rothstein; Silke Schmidt; Andrew Singleton; John Hardy; Bryan J Traynor Journal: Hum Mol Genet Date: 2009-02-04 Impact factor: 6.150