Skip Navigation


Rheumatology Advance Access originally published online on March 25, 2009
Rheumatology 2009 48(6):665-669; doi:10.1093/rheumatology/kep056
This Article
Right arrow Full Text
Right arrow Full Text (PDF)
Right arrow All Versions of this Article:
48/6/665    most recent
kep056v2
kep056v1
Right arrow Alert me when this article is cited
Right arrow Alert me if a correction is posted
Services
Right arrow Email this article to a friend
Right arrow Similar articles in this journal
Right arrow Similar articles in PubMed
Right arrow Alert me to new issues of the journal
Right arrow Add to My Personal Archive
Right arrow Download to citation manager
Right arrowRequest Permissions
Right arrow Disclaimer
Google Scholar
Right arrow Articles by Touitou, I.
PubMed
Right arrow PubMed Citation
Right arrow Articles by Touitou, I.
Related Collections
Right arrow Vasculitis
Right arrow Crystal Arthritis
Right arrow Systemic Lupus Erythematosus and Autoimmunity
Social Bookmarking
Add to CiteULike   Add to Connotea   Add to Del.icio.us  
What's this?

© The Author 2009. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

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.

Correspondence to: Isabelle Touitou, CHRU Montpellier, Unité Médicale des Maladies Auto-inflammatoires, Hôpital A de Villeneuve, Montpellier, France. E-mail: isabelle.touitou{at}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.

KEY WORDS: Auto-inflammatory diseases, Web resources, Patient registry

Submitted 23 October 2008; revised version accepted 18 February 2009.
Add to CiteULike CiteULike   Add to Connotea Connotea   Add to Del.icio.us Del.icio.us    What's this?


This article has been cited by other articles:


Home page
 Rheumatology (Oxford)Home page
Y. Yazici and H. Yazici
Comment on: Web resources for rare auto-inflammatory diseases: towards a common patient registry
Rheumatology, November 10, 2009; (2009) kep341v1.
[Full Text] [PDF]


Disclaimer: Please note that abstracts for content published before 1996 were created through digital scanning and may therefore not exactly replicate the text of the original print issues. All efforts have been made to ensure accuracy, but the Publisher will not be held responsible for any remaining inaccuracies. If you require any further clarification, please contact our Customer Services Department.