Population-based incidence rates of 15 neuromuscular disorders: a nationwide capture-recapture study in the Netherlands

被引：3

作者：

Deenen, Johanna C. W. ^{[1
,2
]}

Horlings, Corinne G. C. ^{[3
]}

Voermans, Nicol C. ^{[1
]}

Doorn, Pieter A. ^{[4
]}

Faber, Catharina G. ^{[5
]}

van der Kooi, Anneke J. ^{[6
]}

Kuks, Jan B. M. ^{[7
]}

Notermans, Nicolette C. ^{[8
]}

Visser, Leo H. ^{[9
]}

Broekgaarden, Ria H. A. ^{[10
]}

Horemans, Anja M. C. ^{[10
]}

Verschuuren, Jan J. G. M. ^{[11
]}

Verbeek, Andre L. M. ^{[2
]}

van Engelen, Baziel G. M. ^{[1
]}

机构：

[1] Radboud Univ Nijmegen Med Ctr, Dept Neurol, Donders Inst Brain Cognit & Behav, POB 9101, NL-6500 HB Nijmegen, Netherlands

[2] Radboud Univ Nijmegen Med Ctr, Dept Hlth Evidence, Radboud Inst Hlth Sci, POB 9101, NL-6500 HB Nijmegen, Netherlands

[3] Med Univ Innsbruck, Dept Neurol, Anichstr 35, A-6020 Innsbruck, Austria

[4] Univ Med Ctr Rotterdam, Erasmus MC, Dept Neurol, POB 2040, NL-3000 CA Rotterdam, Netherlands

[5] Maastricht Univ, Med Ctr, Sch Mental Hlth & Neurosci, Dept Neurol, POB 5800, NL-6202 AZ Maastricht, Netherlands

[6] Amsterdam Univ Med Ctr, Locat AMC, Dept Neurol, Neurosci Inst, POB 22660, NL-1100 DD Amsterdam, Netherlands

[7] Univ Groningen, Dept Neurol, UMC Groningen, NL-9713 AV Groningen, Netherlands

[8] Univ Med Ctr Utrecht, Rudolf Magnus Brain Ctr, Dept Neurol, POB 85500, NL-3508 GA Utrecht, Netherlands

[9] ETZ, locat St Elisabeth Hosp, Dept Neurol, POB 90151, NL-5000 LC Tilburg, Netherlands

[10] Dutch Assoc Neuromuscular Dis, Lt Gen van Heutszlaan 6, NL-3743 JN Baarn, Netherlands

[11] Leiden Univ, Med Ctr, Dept Neurol, POB 9600, NL-2300 RC Leiden, Netherlands

来源：

NEUROMUSCULAR DISORDERS | 2024年 / 42卷

关键词：

Neuromuscular disorder; Muscular disease; Myopathy; Epidemiology; Incidence; INCLUSION-BODY MYOSITIS; PREVALENCE; EPIDEMIOLOGY; DISEASE; MYOPATHIES; SCLEROSIS; REGISTRY;

D O I：

10.1016/j.nmd.2024.07.006

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

Most neuromuscular disorders are rare, but as a group they are not. Nevertheless, epidemiological data of specific neuromuscular disorders are scarce, especially on the incidence. We applied a capture-recapture approach to a nationwide hospital-based dataset and a patients association-based dataset to estimate the annual incidence rates for fifteen neuromuscular disorders in the Netherlands. The annual incidence rates per 10 0,0 0 0 population varied from 0.03/10 0,0 0 0 (95% CI 0.0 0 - 0.06) for glycogenosis type 5 to 0.9/10 0,0 0 0 (95% confidence interval 0.7 - 1.0) for myotonic dystrophy type 1. The summed annual incidence rate of these disorders was 4.1 per 10 0,0 0 0 per population. Nine of the provided incidence rates were previously unavailable, three rates were similar to the rates in the literature, and three rates were generally higher compared to previous findings but with overlapping confidence intervals. This study provides nationwide incidence rates for fifteen neuromuscular disorders predominantly diagnosed in adult life, nine which were previously unavailable. The capture-recapture approach provided estimates of the total number of individuals with neuromuscular disorders. To complete the gaps in the knowledge of disease frequencies, there is a need for estimates from an automated, obligatory data collection system of diagnosed and newly diagnosed patients with neuromuscular disorders. (c) 2024 The Author(s). Published by Elsevier B.V. This is an open access article under the CC BY license ( http://creativecommons.org/licenses/by/4.0/ )

引用

页码：27 / 35

页数：9

共 54 条

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