| Primary immunodeficiency registries. | |
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MedLine Citation:
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PMID: 17989523 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
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PURPOSE OF REVIEW: Research in the field of rare diseases such as primary immunodeficiencies can be significantly improved with sufficient patient numbers. Patient registries can help provide the basis for this by collecting data over a longer period of time and by connecting centres nationally or even internationally. The present article reviews recent publications both on database systems themselves and the research performed using results from these databases. The review also includes older publications on national registries that are considered relevant for the topic. RECENT FINDINGS: Databases that have been set up during past years and decade(s) now include a wealth of data for research on different primary immunodeficiencies and can be queried for studies. Database curation, however, remains an issue in most cases. A lack of time, funding and manpower is the main hurdle to be overcome by curators and participating centres SUMMARY: Several national databases have already produced results. The international patient databases are also ready to launch studies on multiple topics, while mutation data are accessible worldwide through the Internet. The present review introduces database systems as well as results obtained on this basis. |
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Authors:
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Viviane Knerr; Bodo Grimbacher |
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Publication Detail:
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Type: Journal Article; Review |
Journal Detail:
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Title: Current opinion in allergy and clinical immunology Volume: 7 ISSN: 1528-4050 ISO Abbreviation: Curr Opin Allergy Clin Immunol Publication Date: 2007 Dec |
Date Detail:
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Created Date: 2007-11-08 Completed Date: 2008-03-06 Revised Date: - |
Medline Journal Info:
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Nlm Unique ID: 100936359 Medline TA: Curr Opin Allergy Clin Immunol Country: United States |
Other Details:
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Languages: eng Pagination: 475-80 Citation Subset: IM |
Affiliation:
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Department of Immunology & Molecular Pathology, University College London, Royal Free Hospital, London, UK. |
Export Citation:
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| MeSH Terms | |
Descriptor/Qualifier:
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Databases, Factual* Humans Immunologic Deficiency Syndromes* Registries* |
From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
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