Seeking insights into the EPidemiology, treatment and Outcome of Childhood Arthritis through a multinational collaborative effort: Introduction of the EPOCA study

Alessandro Consolaro, Nicolino Ruperto, Giovanni Filocamo, Stefano Lanni, Giulia Bracciolini, Marco Garrone, Silvia Scala, Luca Villa, Giuseppe Silvestri, Daniela Tani, Alessandra Zolesi, Alberto Martini, Angelo Ravelli

Research output: Contribution to journalArticle

65 Citations (Scopus)

Abstract

The epidemiology of juvenile idiopathic arthritis (JIA) is variable worldwide. In particular, a wide disparity exists in the prevalence of the diverse disease subtypes across different geographic areas. The therapeutic approach to JIA is not standardized and no established and widely accepted guidelines are available. In the past decade, there have been important progresses in the management of the disease, but the availability of the novel and costly biologic medications is not uniform throughout the world. This issue may have significant impact on disease prognosis, with children living in poorer countries being at greater risk of accumulating disease- and treatment-related damage than children followed in Western pediatric rheumatology centers. The multinational study of the EPidemiology, treatment and Outcome of Childhood Arthritis (EPOCA study) is aimed to obtain information on the frequency of JIA subtypes in different geographic areas, the therapeutic approaches adopted by pediatric rheumatologists practicing in diverse countries or continents, and the disease and health status of children with JIA currently followed worldwide. Parent- and child-reported outcomes are meant to be recorded through the administration of a new multidimensional questionnaire, the Juvenile Arthritis Multidimensional Assessment Report (JAMAR). The first step of the study is based on the translation and cross-cultural adaptation of the questionnaire in the national language of each participating country. Each center is, then, asked to enroll a sample of consecutive JIA patients, who should undergo a retrospective assessment and a cross-sectional evaluation, including completion of the JAMAR, a standardized joint examination, and the assessment of articular and extra-articular damage. At the end of May 2012, 124 centers in 55 countries have agreed to participate in the study. The JAMAR has been or is currently being translated in 38 national languages. The target patient sample is more than 10,000 JIA children worldwide.

Original languageEnglish
Article number39
JournalPediatric Rheumatology
Volume10
DOIs
Publication statusPublished - Nov 20 2012

Fingerprint

Juvenile Arthritis
Arthritis
Epidemiology
Joints
Language
Pediatrics
Rheumatology
Disease Management
Health Status
Therapeutics
Guidelines

Keywords

  • Epidemiology
  • Juvenile idiopathic arthritis
  • Outcome
  • Treatment

ASJC Scopus subject areas

  • Rheumatology
  • Immunology and Allergy
  • Pediatrics, Perinatology, and Child Health

Cite this

Seeking insights into the EPidemiology, treatment and Outcome of Childhood Arthritis through a multinational collaborative effort : Introduction of the EPOCA study. / Consolaro, Alessandro; Ruperto, Nicolino; Filocamo, Giovanni; Lanni, Stefano; Bracciolini, Giulia; Garrone, Marco; Scala, Silvia; Villa, Luca; Silvestri, Giuseppe; Tani, Daniela; Zolesi, Alessandra; Martini, Alberto; Ravelli, Angelo.

In: Pediatric Rheumatology, Vol. 10, 39, 20.11.2012.

Research output: Contribution to journalArticle

Consolaro, Alessandro ; Ruperto, Nicolino ; Filocamo, Giovanni ; Lanni, Stefano ; Bracciolini, Giulia ; Garrone, Marco ; Scala, Silvia ; Villa, Luca ; Silvestri, Giuseppe ; Tani, Daniela ; Zolesi, Alessandra ; Martini, Alberto ; Ravelli, Angelo. / Seeking insights into the EPidemiology, treatment and Outcome of Childhood Arthritis through a multinational collaborative effort : Introduction of the EPOCA study. In: Pediatric Rheumatology. 2012 ; Vol. 10.
@article{8a93f1c7e4fd40a0ad63c72bdc7c2436,
title = "Seeking insights into the EPidemiology, treatment and Outcome of Childhood Arthritis through a multinational collaborative effort: Introduction of the EPOCA study",
abstract = "The epidemiology of juvenile idiopathic arthritis (JIA) is variable worldwide. In particular, a wide disparity exists in the prevalence of the diverse disease subtypes across different geographic areas. The therapeutic approach to JIA is not standardized and no established and widely accepted guidelines are available. In the past decade, there have been important progresses in the management of the disease, but the availability of the novel and costly biologic medications is not uniform throughout the world. This issue may have significant impact on disease prognosis, with children living in poorer countries being at greater risk of accumulating disease- and treatment-related damage than children followed in Western pediatric rheumatology centers. The multinational study of the EPidemiology, treatment and Outcome of Childhood Arthritis (EPOCA study) is aimed to obtain information on the frequency of JIA subtypes in different geographic areas, the therapeutic approaches adopted by pediatric rheumatologists practicing in diverse countries or continents, and the disease and health status of children with JIA currently followed worldwide. Parent- and child-reported outcomes are meant to be recorded through the administration of a new multidimensional questionnaire, the Juvenile Arthritis Multidimensional Assessment Report (JAMAR). The first step of the study is based on the translation and cross-cultural adaptation of the questionnaire in the national language of each participating country. Each center is, then, asked to enroll a sample of consecutive JIA patients, who should undergo a retrospective assessment and a cross-sectional evaluation, including completion of the JAMAR, a standardized joint examination, and the assessment of articular and extra-articular damage. At the end of May 2012, 124 centers in 55 countries have agreed to participate in the study. The JAMAR has been or is currently being translated in 38 national languages. The target patient sample is more than 10,000 JIA children worldwide.",
keywords = "Epidemiology, Juvenile idiopathic arthritis, Outcome, Treatment",
author = "Alessandro Consolaro and Nicolino Ruperto and Giovanni Filocamo and Stefano Lanni and Giulia Bracciolini and Marco Garrone and Silvia Scala and Luca Villa and Giuseppe Silvestri and Daniela Tani and Alessandra Zolesi and Alberto Martini and Angelo Ravelli",
year = "2012",
month = "11",
day = "20",
doi = "10.1186/1546-0096-10-39",
language = "English",
volume = "10",
journal = "Pediatric Rheumatology",
issn = "1546-0096",
publisher = "BioMed Central Ltd.",

}

TY - JOUR

T1 - Seeking insights into the EPidemiology, treatment and Outcome of Childhood Arthritis through a multinational collaborative effort

T2 - Introduction of the EPOCA study

AU - Consolaro, Alessandro

AU - Ruperto, Nicolino

AU - Filocamo, Giovanni

AU - Lanni, Stefano

AU - Bracciolini, Giulia

AU - Garrone, Marco

AU - Scala, Silvia

AU - Villa, Luca

AU - Silvestri, Giuseppe

AU - Tani, Daniela

AU - Zolesi, Alessandra

AU - Martini, Alberto

AU - Ravelli, Angelo

PY - 2012/11/20

Y1 - 2012/11/20

N2 - The epidemiology of juvenile idiopathic arthritis (JIA) is variable worldwide. In particular, a wide disparity exists in the prevalence of the diverse disease subtypes across different geographic areas. The therapeutic approach to JIA is not standardized and no established and widely accepted guidelines are available. In the past decade, there have been important progresses in the management of the disease, but the availability of the novel and costly biologic medications is not uniform throughout the world. This issue may have significant impact on disease prognosis, with children living in poorer countries being at greater risk of accumulating disease- and treatment-related damage than children followed in Western pediatric rheumatology centers. The multinational study of the EPidemiology, treatment and Outcome of Childhood Arthritis (EPOCA study) is aimed to obtain information on the frequency of JIA subtypes in different geographic areas, the therapeutic approaches adopted by pediatric rheumatologists practicing in diverse countries or continents, and the disease and health status of children with JIA currently followed worldwide. Parent- and child-reported outcomes are meant to be recorded through the administration of a new multidimensional questionnaire, the Juvenile Arthritis Multidimensional Assessment Report (JAMAR). The first step of the study is based on the translation and cross-cultural adaptation of the questionnaire in the national language of each participating country. Each center is, then, asked to enroll a sample of consecutive JIA patients, who should undergo a retrospective assessment and a cross-sectional evaluation, including completion of the JAMAR, a standardized joint examination, and the assessment of articular and extra-articular damage. At the end of May 2012, 124 centers in 55 countries have agreed to participate in the study. The JAMAR has been or is currently being translated in 38 national languages. The target patient sample is more than 10,000 JIA children worldwide.

AB - The epidemiology of juvenile idiopathic arthritis (JIA) is variable worldwide. In particular, a wide disparity exists in the prevalence of the diverse disease subtypes across different geographic areas. The therapeutic approach to JIA is not standardized and no established and widely accepted guidelines are available. In the past decade, there have been important progresses in the management of the disease, but the availability of the novel and costly biologic medications is not uniform throughout the world. This issue may have significant impact on disease prognosis, with children living in poorer countries being at greater risk of accumulating disease- and treatment-related damage than children followed in Western pediatric rheumatology centers. The multinational study of the EPidemiology, treatment and Outcome of Childhood Arthritis (EPOCA study) is aimed to obtain information on the frequency of JIA subtypes in different geographic areas, the therapeutic approaches adopted by pediatric rheumatologists practicing in diverse countries or continents, and the disease and health status of children with JIA currently followed worldwide. Parent- and child-reported outcomes are meant to be recorded through the administration of a new multidimensional questionnaire, the Juvenile Arthritis Multidimensional Assessment Report (JAMAR). The first step of the study is based on the translation and cross-cultural adaptation of the questionnaire in the national language of each participating country. Each center is, then, asked to enroll a sample of consecutive JIA patients, who should undergo a retrospective assessment and a cross-sectional evaluation, including completion of the JAMAR, a standardized joint examination, and the assessment of articular and extra-articular damage. At the end of May 2012, 124 centers in 55 countries have agreed to participate in the study. The JAMAR has been or is currently being translated in 38 national languages. The target patient sample is more than 10,000 JIA children worldwide.

KW - Epidemiology

KW - Juvenile idiopathic arthritis

KW - Outcome

KW - Treatment

UR - http://www.scopus.com/inward/record.url?scp=84869196739&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84869196739&partnerID=8YFLogxK

U2 - 10.1186/1546-0096-10-39

DO - 10.1186/1546-0096-10-39

M3 - Article

C2 - 23164467

AN - SCOPUS:84869196739

VL - 10

JO - Pediatric Rheumatology

JF - Pediatric Rheumatology

SN - 1546-0096

M1 - 39

ER -