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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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Autores principales: Uenal, Hatice, Rosenbohm, Angela, Kufeldt, Johannes, Weydt, Patrick, Goder, Katharina, Ludolph, Albert, Rothenbacher, Dietrich, Nagel, Gabriele
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2014
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983245/
https://www.ncbi.nlm.nih.gov/pubmed/24722455
http://dx.doi.org/10.1371/journal.pone.0093932
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author Uenal, Hatice
Rosenbohm, Angela
Kufeldt, Johannes
Weydt, Patrick
Goder, Katharina
Ludolph, Albert
Rothenbacher, Dietrich
Nagel, Gabriele
author_facet Uenal, Hatice
Rosenbohm, Angela
Kufeldt, Johannes
Weydt, Patrick
Goder, Katharina
Ludolph, Albert
Rothenbacher, Dietrich
Nagel, Gabriele
author_sort Uenal, Hatice
collection PubMed
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 pubmed-39832452014-04-15 Incidence and Geographical Variation of Amyotrophic Lateral Sclerosis (ALS) in Southern Germany – Completeness of the ALS Registry Swabia Uenal, Hatice Rosenbohm, Angela Kufeldt, Johannes Weydt, Patrick Goder, Katharina Ludolph, Albert Rothenbacher, Dietrich Nagel, Gabriele PLoS One Research Article 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. Public Library of Science 2014-04-10 /pmc/articles/PMC3983245/ /pubmed/24722455 http://dx.doi.org/10.1371/journal.pone.0093932 Text en © 2014 Uenal et al http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited.
spellingShingle Research Article
Uenal, Hatice
Rosenbohm, Angela
Kufeldt, Johannes
Weydt, Patrick
Goder, Katharina
Ludolph, Albert
Rothenbacher, Dietrich
Nagel, Gabriele
Incidence and Geographical Variation of Amyotrophic Lateral Sclerosis (ALS) in Southern Germany – Completeness of the ALS Registry Swabia
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
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3983245/
https://www.ncbi.nlm.nih.gov/pubmed/24722455
http://dx.doi.org/10.1371/journal.pone.0093932
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