PRINTO a initiat un proiect complex (EPOCA – EPidemiology, treatment and Outcome of Childhood Arthritis) prin care urmareste crearea unui instrument de anaiza multidimensionala a Artitei Juvenile Idiopatice. Proiectul de bazeaza pe implicarea membrilor din 50 de tari. Gasiti mai jos, o descriere a proiectului in limba engleza, cu informatii generale despre obiective, derulare etc precum si situtia curenta.
By involving more than 50 countries belonging to the network of Paediatric Rheumatology INternational Trials Organisation (PRINTO certified ISO 9001-2008, www.printo.it) EPOCA (EPidemiology, treatment and Outcome of Childhood Arthritis) aims to devise a new tool that enables the multidimensional assessment of the disease status in children with JIA. This new instrument, named Juvenile Arthritis Multidimensional Assessment Report (JAMAR), is simple easy to apply and multidimensional in nature. JAMAR′s objectives are to foster the use of standardized quantitative outcome measures in daily care and to enable comparability of outcome data across different centers. Most clinical measures currently used to assess the disease status, particularly functional ability and health-related quality of life questionnaires, are lengthy and complex. According to agreed international guidelines JAMAR will be widely agreed upon and translated, cross-culturally adapted and validated in different languages by the PRINTO coordinators.
Primary objectives
Outcome
– To translate, cross-culturally adapt and validate the JAMAR in the language of each participating countries
– To compare the current outcomes of children with JIA across continents and countries.
Secondary objectives
Epidemiology
-To characterize and compare the frequency of the JIA categories in different countries and in different continents.
-To describe and compare the prevalence of iridocyclitis in different continents and in different countries.
-To define and compare the prevalence of ANA in the different JIA categories across diverse areas of the world.
Treatment
-To compare the treatments used in the management of children with JIA in different countries.
-To obtain information on the access to biologic medications in different countries.
-To compare the same outcomes by disease category.
Outcome
-To promote regular use of quantitative measures, either physician-centred or parent/patient-centred, in the assessment of children with JIA in standard clinical practice.
-To foster uniformity and standardization of clinical assessment of children with JIA across different countries.
At present…
PRINTO is glad to announce that we have just submitted to Rheumatology International the first batch of 39 papers that will be part of a dedicated supplement of the Journal on patient’s reported outcomes (PRO)s.
The supplement will contain one paper for each cross-culturally adapted and validated version of the JAMAR (for instance “The Italian version of the JAMAR”) and a general introductive manuscript with the description of the methodological approach. This methodological paper is currently in draft and will include the data related to the 39 countries for which the analysis has been already completed and will be progressively updated with the data of the the remaining 11 manuscripts still in progress.
The authorship of each manuscript is defined according to PRINTO policy and ICMJE recommendations for authorship and completed with local input. The main responsible of the project in each country is listed in the first positions followed by the remaining significant authors. Additional people are listed in the acknowledgment section.
Globally, for EPOCA, PRINTO has collected by now more than 9000 JIA patients and almost 5000 healthy controls from 125 centres in 51 countries.
Thanks to all the participating centres for their effort and contribution within the EPOCA study!
