| Web resources for rare auto-inflammatory diseases: towards a common patient registry. | |
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MedLine Citation:
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PMID: 19321516 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
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OBJECTIVES: To review information resources on rare auto-inflammatory disorders (AIDs) for use by health care professionals, focusing particularly on patient registries. METHODS: Using relevant key words, we surveyed the websites of several scientific societies of immunology, paediatrics and rheumatology, as well as Pubmed and specialized databases for AIDs. RESULTS: The Internet provides a wide variety of information related to AIDs. Moreover, several other initiatives have been undertaken to create new resources for professionals. We reviewed six patient registries for rare AIDs, taking a special interest in the submission questionnaire. We revealed a wide overlap between the items used in the questionnaires, whereas the currently available registries appeared inappropriate for AIDs patients with complex or undefined diagnosis. CONCLUSIONS: AIDs share common clinical features, pathophysiological pathways and therapeutic approaches. Although several resources are now available for rare AIDs, a unique and dedicated site gathering all aspects of these diseases as a whole is still lacking, i.e. covering research as well as the needs of AIDs patients and health care professionals. Our study thus advocates a merging of existing patient registries or the creation of a common database. |
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Authors:
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Isabelle Touitou; Véronique Hentgen; Isabelle Koné-Paut; |
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Publication Detail:
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Type: Journal Article; Research Support, Non-U.S. Gov't Date: 2009-03-25 |
Journal Detail:
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Title: Rheumatology (Oxford, England) Volume: 48 ISSN: 1462-0332 ISO Abbreviation: Rheumatology (Oxford) Publication Date: 2009 Jun |
Date Detail:
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Created Date: 2009-05-14 Completed Date: 2009-07-06 Revised Date: 2009-12-09 |
Medline Journal Info:
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Nlm Unique ID: 100883501 Medline TA: Rheumatology (Oxford) Country: England |
Other Details:
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Languages: eng Pagination: 665-9 Citation Subset: AIM; IM |
Affiliation:
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CHRU Montpellier, Unité Médicale des Maladies Auto-inflammatoires, Hôpital A de Villeneuve, Montpellier, France. isabelle.touitou@igh.cnrs.fr |
Export Citation:
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| MeSH Terms | |
Descriptor/Qualifier:
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Autoimmune Diseases* Humans Internet* Medical Informatics Rare Diseases* Registries* |
| Comments/Corrections | |
Comment In:
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Rheumatology (Oxford). 2010 Jan;49(1):198; author reply 198-9
[PMID:
19903728
]
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From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
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