Title |
Establishing a network of specialist Porphyria centres - effects on diagnostic activities and services
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Published in |
Orphanet Journal of Rare Diseases, December 2012
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DOI | 10.1186/1750-1172-7-93 |
Pubmed ID | |
Authors |
Mette C Tollånes, Aasne K Aarsand, Jørild Haugen Villanger, Egil Støle, Jean-Charles Deybach, Joanne Marsden, Jordi To-Figueras, Sverre Sandberg, On behalf of the European Porphyria Network (EPNET) |
Abstract |
The porphyrias are a heterogeneous group of rare metabolic diseases. The full spectrum of porphyria diagnostics is usually performed by specialized porphyria laboratories or centres. The European Porphyria Initiative (EPI), a collaborative network of porphyria centres formed in 2001, evolved in 2007 into the European Porphyria Network (EPNET), where participating centres are required to adhere to agreed quality criteria. The aim of this study was to examine the state and distribution of porphyria diagnostic services in 2009 and to explore potential effects of increased international collaboration in the field of these rare diseases in the period 2006-2009. |
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Mexico | 1 | 33% |
Unknown | 2 | 67% |
Demographic breakdown
Type | Count | As % |
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Members of the public | 2 | 67% |
Scientists | 1 | 33% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
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Unknown | 7 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
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Researcher | 1 | 14% |
Student > Doctoral Student | 1 | 14% |
Unknown | 5 | 71% |
Readers by discipline | Count | As % |
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Biochemistry, Genetics and Molecular Biology | 1 | 14% |
Medicine and Dentistry | 1 | 14% |
Unknown | 5 | 71% |