State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance

Our objective was to develop state and metropolitan area-based surveillance projects to describe the characteristics of those with ALS and to assist with evaluating the completeness of the National ALS Registry. Because the literature suggested that ethnic/racial minorities have lower incidence of A...

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Main Authors:	Wagner, Laurie, Rechtman, Lindsay, Jordan, Heather, Ritsick, Maggie, Sanchez, Marchelle, Sorenson, Eric, Kaye, Wendy
Format:	Online
Language:	English
Published:	Taylor & Francis 2016
Online Access:	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4732418/

id	pubmed-4732418
recordtype	oai_dc
spelling	pubmed-47324182016-02-16 State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance Wagner, Laurie Rechtman, Lindsay Jordan, Heather Ritsick, Maggie Sanchez, Marchelle Sorenson, Eric Kaye, Wendy Original Article Our objective was to develop state and metropolitan area-based surveillance projects to describe the characteristics of those with ALS and to assist with evaluating the completeness of the National ALS Registry. Because the literature suggested that ethnic/racial minorities have lower incidence of ALS, three state and eight metropolitan areas were selected to over-represent ethnic/racial minorities to have a sufficient number of minority patients. Project activities relied on reports from medical providers and medical records abstraction. The project areas represented approximately 27% of the U.S. population. The combined racial and ethnic distribution of these areas is 64.4% white, 16.0% African-American, 6.7% Asian, and 28.3% Hispanic. Most neurologists did not diagnose or provide care for ALS patients. The number of unique patients reported was close to expected (5883 vs. 6673). Age and gender distribution of patients was similar to the literature. The crude average annual incidence rate was 1.52 per 100,000 person-years, CI 1.44–1.61, and the 2009 prevalence rate was 3.84 per 100,000 population, CI 3.70–3.97. In conclusion, this study represents the largest number of clinically diagnosed ALS patients reported by neurologists in the U.S. Comparison of these data with those in the National ALS Registry will help evaluate the completeness of administrative databases. Taylor & Francis 2016-02-17 2015-09-23 /pmc/articles/PMC4732418/ /pubmed/26399278 http://dx.doi.org/10.3109/21678421.2015.1074699 Text en © 2015 Informa Healthcare http://creativecommons.org/licenses/by-nc-nd/3.0/ This is an open-access article distributed under the terms of the CC-BY-NC-ND 3.0 License which permits users to download and share the article for non-commercial purposes, so long as the article is reproduced in the whole without changes, and provided the original source is credited.
repository_type	Open Access Journal
institution_category	Foreign Institution
institution	US National Center for Biotechnology Information
building	NCBI PubMed
collection	Online Access
language	English
format	Online
author	Wagner, Laurie Rechtman, Lindsay Jordan, Heather Ritsick, Maggie Sanchez, Marchelle Sorenson, Eric Kaye, Wendy
spellingShingle	Wagner, Laurie Rechtman, Lindsay Jordan, Heather Ritsick, Maggie Sanchez, Marchelle Sorenson, Eric Kaye, Wendy State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance
author_facet	Wagner, Laurie Rechtman, Lindsay Jordan, Heather Ritsick, Maggie Sanchez, Marchelle Sorenson, Eric Kaye, Wendy
author_sort	Wagner, Laurie
title	State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance
title_short	State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance
title_full	State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance
title_fullStr	State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance
title_full_unstemmed	State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance
title_sort	state and metropolitan area-based amyotrophic lateral sclerosis (als) surveillance
description	Our objective was to develop state and metropolitan area-based surveillance projects to describe the characteristics of those with ALS and to assist with evaluating the completeness of the National ALS Registry. Because the literature suggested that ethnic/racial minorities have lower incidence of ALS, three state and eight metropolitan areas were selected to over-represent ethnic/racial minorities to have a sufficient number of minority patients. Project activities relied on reports from medical providers and medical records abstraction. The project areas represented approximately 27% of the U.S. population. The combined racial and ethnic distribution of these areas is 64.4% white, 16.0% African-American, 6.7% Asian, and 28.3% Hispanic. Most neurologists did not diagnose or provide care for ALS patients. The number of unique patients reported was close to expected (5883 vs. 6673). Age and gender distribution of patients was similar to the literature. The crude average annual incidence rate was 1.52 per 100,000 person-years, CI 1.44–1.61, and the 2009 prevalence rate was 3.84 per 100,000 population, CI 3.70–3.97. In conclusion, this study represents the largest number of clinically diagnosed ALS patients reported by neurologists in the U.S. Comparison of these data with those in the National ALS Registry will help evaluate the completeness of administrative databases.
publisher	Taylor & Francis
publishDate	2016
url	https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4732418/
_version_	1613530468360126464

State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance

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