Geographical distribution of eight neuromuscular disorders in the Netherlands based on a nationwide registry
Neuromuscular disorders are a very heterogeneous group of diseases and comprise a large number of patients. Epidemiological key figures on incidence, prevalence and mortality serve as basic information for individualised and public health care and researchers. Geographical mapping of the specific di...
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| Format: | Article |
| Language: | English |
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Elsevier
2025-01-01
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S295000872500002X |
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| author | Johanna C.W. Deenen André L.M. Verbeek Pieter A. van Doorn Catharina G. Faber Anneke J. van der Kooi Nicolette C. Notermans Jan J.G.M. Verschuuren Baziel G.M. van Engelen Nicol C. Voermans |
| author_facet | Johanna C.W. Deenen André L.M. Verbeek Pieter A. van Doorn Catharina G. Faber Anneke J. van der Kooi Nicolette C. Notermans Jan J.G.M. Verschuuren Baziel G.M. van Engelen Nicol C. Voermans |
| author_sort | Johanna C.W. Deenen |
| collection | DOAJ |
| description | Neuromuscular disorders are a very heterogeneous group of diseases and comprise a large number of patients. Epidemiological key figures on incidence, prevalence and mortality serve as basic information for individualised and public health care and researchers. Geographical mapping of the specific disorders is expected to provide valuable insights into clustering of the conditions, which points to possible environmental and genetical determinants. So far, mostly geographical maps of motor neuron diseases have been reported. By using record information from the Dutch nationwide Computer Registry of All Myopathies and Polyneuropathies (CRAMP) we aimed to generate geographical maps for eight disorders predominantly diagnosed in adults. We investigated the geographical distribution of newly diagnosed patients in the Netherlands from 2004 to 2011. The variables used were diagnosis, date of diagnosis, and the first two digits of the postal code for geographical location from CRAMP. The number of incident cases was divided by the total number of people populating the postal code area. Nationwide incidence maps were constructed for myotonic dystrophy, progressive (spinal) muscular atrophy, chronic inflammatory demyelinating polyneuropathy, facioscapulohumeral muscular dystrophy, inclusion body myositis, hereditary motor and sensory neuropathy, Pompe disease and oculopharyngeal muscular dystrophy. Considerable regional variation between disorders was observed, particularly for myotonic dystrophy and facioscapulohumeral muscular dystrophy. We provided the first neuromuscular atlas of the Netherlands with maps for eight disorders commonly seen in the neuromuscular practice. To address possible outliers due to low population numbers, Bayesian smoothing techniques should be considered in future research. |
| format | Article |
| id | doaj-art-bf54ff984600479f84c22c36bd357a0a |
| institution | Kabale University |
| issn | 2950-0087 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Rare |
| spelling | doaj-art-bf54ff984600479f84c22c36bd357a0a2025-01-18T05:05:42ZengElsevierRare2950-00872025-01-013100059Geographical distribution of eight neuromuscular disorders in the Netherlands based on a nationwide registryJohanna C.W. Deenen0André L.M. Verbeek1Pieter A. van Doorn2Catharina G. Faber3Anneke J. van der Kooi4Nicolette C. Notermans5Jan J.G.M. Verschuuren6Baziel G.M. van Engelen7Nicol C. Voermans8Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, PO Box 9101, Nijmegen 6500 HB, the NetherlandsDepartment for Health Evidence, Radboud Institute for Health Sciences, Radboud University Medical Center, PO Box 9101, Nijmegen 6500 HB, the NetherlandsDepartment of Neurology, Erasmus MC University Medical Center, Rotterdam, PO Box 2040, Rotterdam 3000 CA, the NetherlandsDepartment of Neurology, School of Mental Health and Neuroscience, Maastricht University Medical Center, PO Box 5800, Maastricht 6202 AZ, the NetherlandsDepartment of Neurology, Amsterdam University Medical Center, location AMC, Neuroscience institute, PO Box 22660, Amsterdam 1100 DD, the NetherlandsUniversity Medical Centre Utrecht, Department of Neurology, Rudolf Magnus Brain Center, PO Box 85500, Utrecht 3508 GA, the NetherlandsDepartment of Neurology, Leiden University Medical Center, PO Box 9600, Leiden 2300 RC, the NetherlandsDepartment of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, PO Box 9101, Nijmegen 6500 HB, the NetherlandsDepartment of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, PO Box 9101, Nijmegen 6500 HB, the Netherlands; Corresponding author.Neuromuscular disorders are a very heterogeneous group of diseases and comprise a large number of patients. Epidemiological key figures on incidence, prevalence and mortality serve as basic information for individualised and public health care and researchers. Geographical mapping of the specific disorders is expected to provide valuable insights into clustering of the conditions, which points to possible environmental and genetical determinants. So far, mostly geographical maps of motor neuron diseases have been reported. By using record information from the Dutch nationwide Computer Registry of All Myopathies and Polyneuropathies (CRAMP) we aimed to generate geographical maps for eight disorders predominantly diagnosed in adults. We investigated the geographical distribution of newly diagnosed patients in the Netherlands from 2004 to 2011. The variables used were diagnosis, date of diagnosis, and the first two digits of the postal code for geographical location from CRAMP. The number of incident cases was divided by the total number of people populating the postal code area. Nationwide incidence maps were constructed for myotonic dystrophy, progressive (spinal) muscular atrophy, chronic inflammatory demyelinating polyneuropathy, facioscapulohumeral muscular dystrophy, inclusion body myositis, hereditary motor and sensory neuropathy, Pompe disease and oculopharyngeal muscular dystrophy. Considerable regional variation between disorders was observed, particularly for myotonic dystrophy and facioscapulohumeral muscular dystrophy. We provided the first neuromuscular atlas of the Netherlands with maps for eight disorders commonly seen in the neuromuscular practice. To address possible outliers due to low population numbers, Bayesian smoothing techniques should be considered in future research.http://www.sciencedirect.com/science/article/pii/S295000872500002XNeuromuscular disorderMuscular diseaseEpidemiologyIncidenceGeographical distribution |
| spellingShingle | Johanna C.W. Deenen André L.M. Verbeek Pieter A. van Doorn Catharina G. Faber Anneke J. van der Kooi Nicolette C. Notermans Jan J.G.M. Verschuuren Baziel G.M. van Engelen Nicol C. Voermans Geographical distribution of eight neuromuscular disorders in the Netherlands based on a nationwide registry Rare Neuromuscular disorder Muscular disease Epidemiology Incidence Geographical distribution |
| title | Geographical distribution of eight neuromuscular disorders in the Netherlands based on a nationwide registry |
| title_full | Geographical distribution of eight neuromuscular disorders in the Netherlands based on a nationwide registry |
| title_fullStr | Geographical distribution of eight neuromuscular disorders in the Netherlands based on a nationwide registry |
| title_full_unstemmed | Geographical distribution of eight neuromuscular disorders in the Netherlands based on a nationwide registry |
| title_short | Geographical distribution of eight neuromuscular disorders in the Netherlands based on a nationwide registry |
| title_sort | geographical distribution of eight neuromuscular disorders in the netherlands based on a nationwide registry |
| topic | Neuromuscular disorder Muscular disease Epidemiology Incidence Geographical distribution |
| url | http://www.sciencedirect.com/science/article/pii/S295000872500002X |
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