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Rheumatology (Oxford). 2009 Jun;48(6):665-9. doi: 10.1093/rheumatology/kep056. Epub 2009 Mar 25.

Web resources for rare auto-inflammatory diseases: towards a common patient registry.

Author information

1
CHRU Montpellier, Unité Médicale des Maladies Auto-inflammatoires, Hôpital A de Villeneuve, Montpellier, France. isabelle.touitou@igh.cnrs.fr

Abstract

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.

PMID:
19321516
DOI:
10.1093/rheumatology/kep056
[Indexed for MEDLINE]

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