REVIEW - Web resources for rare autoinflammatory diseases: towards a common patient registry

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Rheumatology Advance Access originally published online on March 25, 2009

Rheumatology 2009 48(6):665-669; doi:10.1093/rheumatology/kep056

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

patient registry

Isabelle Touitou1, Véronique Hentgen2, Isabelle Koné-Paut3 on behalf

of The French Reference Centre for Auto-Inflammatory Diseases

1CHRU Montpellier, Unité Médicale des Maladies Auto-inflammatoires,

Hôpital A de Villeneuve, Montpellier,2CH Versailles, Service de

Pédiatrie, Versailles and 3CHU Kremlin-Bicêtre, Service de Pédiatrie

Générale, Rhumatologie, Bicêtre, France.

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.

http://rheumatology.oxfordjournals.org/cgi/content/abstract/48/6/665?etoc

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