PRINTO ongoing project details

EPOCA

EPOCA

Juvenile idiopathic arthritis (JIA) is the most common chronic paediatric rheumatic disease and an important cause of short and long-term disability and quality of life impairment.

Due to the disease heterogeneity and the differences in epidemiology, treatment approaches and drug availability, there are likely many differences in the outcome of children with JIA across the world. Although several outcome studies have been published by now, most of these researches have involved single centers or a few countries in the same geographic area and a comparison of the disease outcomes across different regions of the world has never been attempted. Furthermore, most past analysis have focused on single aspects of disease outcome, such as remission, functional disability, radiographic damage, or health-related quality of life and a multidimensional approach in outcome assessment has rarely been pursued. Outcome has not frequently been evaluated through the combination of parent- and physician-centred measures and children self-report of outcome status has rarely been considered. Moreover the disease status has seldom been validated with an objective evaluation performed by the physician.

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 all the 51 papers included in a dedicated supplement of Rheumatology International on Patient’s Reported Outcomes (PRO)s have been finally published on line.

Volume 38, Issue 1 Supplement, April 2018

Supplement: Cross-cultural Adaptation and Validation of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) for the Assessment of the Disease Status in Children with Juvenile Idiopathic Arthritis: An International Effort by the Paediatric Rheumatology INternational Trials Organisation (PRINTO)

Rheumathology International - ISSN: 0172-8172 (Print) 1437-160X (Online)

You can find all the manuscripts of the Supplement at the following link:

https://link.springer.com/journal/296/38/1/suppl/page/1

All the manuscripts of the JAMAR Supplement are also available on the PRINTO website and listed below in this page.

The JAMAR supplement contains one paper for each cross-culturally adapted and validated version of the questionnaire (title example: The Italian version of the JAMAR, etc.) and a general introductive manuscript with the description of the methodological approach.

PRINTO finally cross-culturally adapted and validated the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) questionnaire in 54 languages across 52 different countries members of the network.

A total of 9021 JIA patients and 4822 healthy children were enrolled from the 49 countries that took part both in the cross-cultural adaptation phase and in the related validation and data collection: Algeria, Argentina, Belgium, Brazil, Bulgaria, Canada, Chile, Colombia, Croatia, Czech Republic, Denmark, Ecuador, Egypt, Estonia, Finland, France, Georgia, Germany, Greece, Hungary, India, Islamic Republic of Iran, Israel, Italy, Latvia, Libya, Lithuania, Mexico, Netherlands, Norway, Oman, Paraguay, Poland, Portugal, Romania, Russian Federation, Saudi Arabia, Serbia, Slovakia, Slovenia, South Africa, Spain, Sweden, Switzerland, Thailand, Turkey, Ukraine, United Kingdom and United States of America.

The introductory paper describes the overall methodology, while the results related to each country are fully described by the 282 different authors of the 49 individual manuscripts . The JAMAR was found to have satisfactory psychometric properties and it was thus demonstrated to be a reliable and valid tool for the multidimensional assessment of children with JIA.

The cross-cultural adaptation and validation of the JAMAR could have not been accomplished without the support and the cooperation of the PRINTO members in their local paediatric rheumatology centres, as well as the participation of the families of the JIA patients and healthy controls.



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Consolaro A, Bovis F, Pistorio A, Cimaz R, De Benedetti F, Miniaci A, Corona F, Gerloni V, Martino S, Pastore S, Barone P, Pieropan S, Cortis E, Podda R A, Gallizzi R, Civino A, La Torre F, Rigante D, Consolini R, Maggio M C, Magni-Manzoni S, Perfetti F, Filocamo G, Toppino C, Licciardi F, Garrone M, Scala S, Patrone E, Tonelli M, Tani D, Ravelli A, Martini A, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
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Al-Abrawi S, Al-Mayouf S M, Abdwani R, Abdalla E I A A, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
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Rutkowska-Sak L, Smolewska E, Zygmunt A, Kwiatkowska M, Gazda A, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
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Lazăr C, Iagăru N, Ailioaie C, Ailioaie LM, Laday M, Apostol A, Spîrchez M, Badiu Tișa I, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
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Toplak N, Avcin T, Camernik M, Hren M, Sever M, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Slovene version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
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Scott C, Okong’o L, Brice N, Murless S, Slamang W, Fadlelmola A, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Afrikaans version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S19–S26
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De Inocencio J, Anton J, Calvo Penades I, Mesa-del-Castillo P, Alcobendas R, Boteanu AL, Bou R, Iglesias E, González Fernandez MI, López Montesinos B, Santin P, Alcañiz Rodriguez P, Lorente Sanchez MJ, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Castilian Spanish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S91–S98
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Ekelund M, Berntson L, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Swedish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S371–S377
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Vilaiyuk S, Soponkanaporn S, Lerkvaleekul B, Pipatkullachart T, Mairiang D, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Thai version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S387–S393
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Boyko Y, Hrytsiuk I, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Ukrainian version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S403–S409
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Martin N, Davidson J, Anderson C, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The British English version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S67–S73
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Lovell DJ, Brunner HI, Ringold S, Weiss PF, Martin N, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The American English version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S35–S42
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Bovis F, Consolaro A, Pistorio A, Garrone M, Scala S, Patrone E, Rinaldi M, Villa L, Martini A, Ravelli A, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
Cross-cultural adaptation and psychometric evaluation of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) in 54 languages across 52 countries: review of the general methodology
Rheumatol Int 2018;38 (Suppl 1):S5–S17
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Herrera Mora C, Garay SM, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Ecuadorian Spanish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S147–S153
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Aiche MF, Djoudi H, Al-Mayouf SM, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Algerian Arabic version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S27–S33
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Demirkaya E, Ozen S, Sozeri B, Aktay Ayaz N, Kasapcopur O, Unsal E, Bora Makay B, Barut K, Fidanci BE, Simsek D, Cakan M, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Turkish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S395–S402
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Lahdenne P, Aalto K, Rebane K, Vahasalo P, Putto-Laurila AK, Malin M, Kroger L, Saila H, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Finnish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S179–S186
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Melo-Gomes JA, Oliveira-Ramos F, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Portuguese version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S323–S329
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Ravelli A, Consolaro A, for the Epidemiology, treatment and Outcome of Childhood Arthritis (EPOCA) project; Martini A and Ruperto N, for the Paediatric Rheumatology International Trials Organisation (PRINTO)
Preface to the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) Supplement in Rheumatology International
Rheumatol Int 2018;38 (Suppl 1):S1–S3
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Sherman G, Nemet D, Moshe V, Consolaro A, Ravelli A, Ruperto N, Uziel Y for the Paediatric Rheumatology International Trials Organisation (PRINTO)
Disease activity, overweight, physical activity and screen time in a cohort of patients with juvenile idiopathic arthritis
Clin Exp Rheumatol. [Epub ahead of print]
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Miettunen P, Chédeville G, Mazza J, Hofer M, Montobbio C, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Canadian version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S83–S90
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Hofer M, von Scheven-Gête A, Santos M, Quartier P, Wouters C, Vanoni F, Saurenmann RK, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Swiss French version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S379–S386
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Dehoorne J, Joos R, Wouters C, Swart JF, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Flemish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S187–S194
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Nikishina I, Alexeeva E, Arsenyeva S, Salugina S, Kaleda M, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Russian version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S339–S346
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Malagon C, Mosquera Pongutà AC, De Inocencio J, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Colombian Spanish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S107–S113
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Norambuena X, Consolaro A, Bovis F, Ruperto N for the Paediatric Rheumatology International Trials Organisation (PRINTO)
The Chilean Spanish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)
Rheumatol Int 2018;38 (Suppl 1):S99–S105
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Consolaro A, Ruperto N, Filocamo G, Lanni S, Bracciolini G, Garrone M, Scala S, Villa L, Silvestri G, Tani D, Zolesi A, Martini A, Ravelli A for the Paediatric Rheumatology International Trials Organisation (PRINTO).
Seeking insights into the EPidemiology, treatment and Outcome of Childhood Arthritis through a multinational collaborative effort: Introduction of the EPOCA study.
Pediatric Rheumatology 2012;10:39.
Year: 2012 -GO TO RELATED PUBMED ARTICLE -
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Consolaro A, Ruperto N, Pistorio A, Lattanzi B, Solari N, Galasso R, Pederzoli S, Varnier GC, Dolezalova P, Alessio M, Burgos-Vargas R, Vesely R, Martini A, Ravelli A for the Paediatric Rheumatology International Trials Organisation (PRINTO).
Development and initial validation of composite parent and child centered disease assessment indices for juvenile idiopathic arthritis.
Arthritis Care Res 2011;63:1262-1270
Year: 2011 -GO TO RELATED PUBMED ARTICLE -
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