Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia.

Objective of this paper was to investigate the incidence, potential geographical clusters and the completeness of the amyotrophic lateral sclerosis (ALS) registry in Southern Germany (Swabia). Age-standardized incidence rates (ASR) and ratios (SIR) as well as 95% confidence intervals (CI) were estim...

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Main Authors: Hatice Uenal, Angela Rosenbohm, Johannes Kufeldt, Patrick Weydt, Katharina Goder, Albert Ludolph, Dietrich Rothenbacher, Gabriele Nagel, ALS registry Study Group
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2014-01-01
Series:PLoS ONE
Online Access:http://europepmc.org/articles/PMC3983245?pdf=render
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author Hatice Uenal
Angela Rosenbohm
Johannes Kufeldt
Patrick Weydt
Katharina Goder
Albert Ludolph
Dietrich Rothenbacher
Gabriele Nagel
ALS registry Study Group
author_facet Hatice Uenal
Angela Rosenbohm
Johannes Kufeldt
Patrick Weydt
Katharina Goder
Albert Ludolph
Dietrich Rothenbacher
Gabriele Nagel
ALS registry Study Group
author_sort Hatice Uenal
collection DOAJ
description Objective of this paper was to investigate the incidence, potential geographical clusters and the completeness of the amyotrophic lateral sclerosis (ALS) registry in Southern Germany (Swabia). Age-standardized incidence rates (ASR) and ratios (SIR) as well as 95% confidence intervals (CI) were estimated at county level. Capture-recapture (CARE) procedures were applied taking data source dependency into account to estimate the quality of case ascertainment in the ALS registry Swabia. We identified 438 ALS cases (53% men, 47% women) in the target population of about 8.4 Mio inhabitants. The gender ratio (men∶women) was 1.1∶1. The mean age at onset of ALS was 63.8 (SD = 11.9) years for men and 66.0 (12.2) for women. The age distribution peaked in the age group 70-74 years. The ASR of ALS was 2.5 per 100,000 person years (PY; 95% CI: 2.3-2.7). The mean SIR was 1.1 per 100,000 PY (95% CI: 1.0-1.2). High SIR suggesting geographical clusters were observed in two counties (Göppingen and Bodenseekreis), but the variation was not statistically significant (p-values = 0.2 and 0.5). The percentage of CARE estimated missing cases was 18.9% in the registry yielding an ASR of 3.1 per 100,000 PY. The high coverage of the CARE estimated completeness of the ALS registry Swabia indicates excellent quality for future projects. Regional variations have to be investigated further.
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spelling doaj.art-2627dbd5b14f490f8b2ad3f54fba95a62022-12-22T03:12:47ZengPublic Library of Science (PLoS)PLoS ONE1932-62032014-01-0194e9393210.1371/journal.pone.0093932Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia.Hatice UenalAngela RosenbohmJohannes KufeldtPatrick WeydtKatharina GoderAlbert LudolphDietrich RothenbacherGabriele NagelALS registry Study GroupObjective of this paper was to investigate the incidence, potential geographical clusters and the completeness of the amyotrophic lateral sclerosis (ALS) registry in Southern Germany (Swabia). Age-standardized incidence rates (ASR) and ratios (SIR) as well as 95% confidence intervals (CI) were estimated at county level. Capture-recapture (CARE) procedures were applied taking data source dependency into account to estimate the quality of case ascertainment in the ALS registry Swabia. We identified 438 ALS cases (53% men, 47% women) in the target population of about 8.4 Mio inhabitants. The gender ratio (men∶women) was 1.1∶1. The mean age at onset of ALS was 63.8 (SD = 11.9) years for men and 66.0 (12.2) for women. The age distribution peaked in the age group 70-74 years. The ASR of ALS was 2.5 per 100,000 person years (PY; 95% CI: 2.3-2.7). The mean SIR was 1.1 per 100,000 PY (95% CI: 1.0-1.2). High SIR suggesting geographical clusters were observed in two counties (Göppingen and Bodenseekreis), but the variation was not statistically significant (p-values = 0.2 and 0.5). The percentage of CARE estimated missing cases was 18.9% in the registry yielding an ASR of 3.1 per 100,000 PY. The high coverage of the CARE estimated completeness of the ALS registry Swabia indicates excellent quality for future projects. Regional variations have to be investigated further.http://europepmc.org/articles/PMC3983245?pdf=render
spellingShingle Hatice Uenal
Angela Rosenbohm
Johannes Kufeldt
Patrick Weydt
Katharina Goder
Albert Ludolph
Dietrich Rothenbacher
Gabriele Nagel
ALS registry Study Group
Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia.
PLoS ONE
title Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia.
title_full Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia.
title_fullStr Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia.
title_full_unstemmed Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia.
title_short Incidence and geographical variation of amyotrophic lateral sclerosis (ALS) in Southern Germany--completeness of the ALS registry Swabia.
title_sort incidence and geographical variation of amyotrophic lateral sclerosis als in southern germany completeness of the als registry swabia
url http://europepmc.org/articles/PMC3983245?pdf=render
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