PRINTO ongoing project details

Eurofever Project

Eurofever Project

The Eurofever project was promoted in 2008 by the work group of autoinflammatory diseases of the Paediatric Rheumatology European Society (PRES) and was supported by the Executive Agency for Health and Consumers (EAHC). 

The general aims of the Eurofever project are to: 

· sensitive pediatricians and pediatric rheumatologists to the prompt recognition of Autoinflammatory Diseases; 

· provide proper information to families affected by these conditions; 

· increase the knowledge on the clinical presentation, response to treatment and complications of theses rare disorders. 



The main objective of the project has been the creation of a registry of autoinflammatory diseases. 

Last year a new section dedicated to Efficacy and Safety has been implemented and the registry is now able to collect also longitudinal information. 

New auto - inflammatory diseases have been added, as of today the following conditions are considered by the Project: 



· Behçet disease

· Blau’s syndrome/Early onset sarcoidosis

· Cryopyrin associated periodic syndrome

· Chronic recurrent multifocal osteomyelitis

· Deficiency of IL-1 receptor antagonist

· Familial Mediterrean Fever

· Mevalonate kinase deficency (Hyper IgD syndrome)

· NLRP12 -associated periodic syndrome

· Pyogenic Sterile Arthritis, Pyoderma Gangrenosum and Acne (PAPA) syndrome

· Tumor necrosis factor receptor-associated periodic syndrome (TRAPS)

· Periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis (PFAPA)

· CANDLE syndrome

· DITRA syndrome

· Schnitzler syndrome

· Majeed syndrome

· Deficiency of Adenosine Deaminase 2 (DADA2)

· STING-asociated vasculopathy with onset in infancy (SAVI)

· CARD14 mediated psoriasis (CAMPS)

· Undefined Periodic fever 


Related articles

Toplak N, Dolezalovà P, Constantin T, Sedivà A, Pašiæ S, Èižnar P, Wolska-Kuœnierz B, Harjaèek M, Stefan M, Ruperto N, Gattorno M, Avèin T and Eastern/Central European autoinflammatory collaborating group for the Paediatric Rheumatology International Trials Organisation (PRINTO) and Eurofever Project.
Periodic fever syndromes in Eastern and Central European countries: results of a pediatric. multinational survey.
Pediatr Rheumatol Online J. 2010;8:29.
Year: 2010 -GO TO RELATED PUBMED ARTICLE -
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Ozen S, Frenkel J, Ruperto N, Gattorno M on behalf of the Eurofever Project
The Eurofever project: towards better care for autoinflammatory diseases
Eur J Pediatr 2011;170:445-452
Year: 2011 -GO TO RELATED PUBMED ARTICLE -
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Toplak N, Frenkel J, Ozen S, Lachmann HJ, Woo P, Koné-Paut I, De Benedetti F, Neven B, HoferM, Dolezalova P, Kümmerle-Deschner J, Touitou I, Hentgen V, Simon A, Girschick H, Rose C, Wouters C, Vesely R, Arostegui J, Stojanov S, Ozgodan H, Martini A, Ruperto N, Gattorno M for the Paediatric Rheumatology International Trials Organisation (PRINTO).
An International registry on Autoinflamatory diseases: the Eurofever experience.
Ann Rheum Dis 2012;71:1177-1182
Year: 2012 -GO TO RELATED PUBMED ARTICLE -
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ter Haar NM , Lachmann HJ, Ozen S, Woo P, Uziel Y, Modesto C, Koné-Paut I, Cantarini L, Insalaco A, Neven B, Hofer M, Rigante D, Al-Mayouf SM, Touitou I, Gallizzi R, Papadopoulou-Alataki E, Martino S, Kuemmerle-Deschner JB, Obici L, Iagaru N, Simon A, Nielsen S, Martini A, Ruperto N, Gattorno M, Frenkel J for the Paediatric Rheumatology International Trials Organisation (PRINTO) and the Eurofever/Eurotraps Projects.
Treatment of autoinflammatory diseases: results from the Eurofever registry and a literature review.
Ann Rheum Dis 2013;72:678-685
Year: 2013 -GO TO RELATED PUBMED ARTICLE -
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Lachmann HJ, Papa R, Gerhold K, Obici L, Touitou I, Cantarini L, Frenkel J, Anton J, Kone-Paut I, Cattalini M, Bader-Meunier B, Insalaco A, Hentgen V, Merino R, Modesto C, Toplak N, Berendes R, Ozen S, Cimaz R, Jansson A, Brogan P, Hawkins PN, Ruperto N, Martini A, Woo P, Gattorno M for the Paediatric Rheumatology International Trials Organisation (PRINTO); the Eurotraps and the Eurofever Project.
The phenotype of TNF-receptor associated autoinflammatory syndrome (TRAPS) at presentation: a series of 158 cases from the EUROFEVER/EUROTRAPS international registry
Ann Rheum Dis 2014;73:2160-2167.
Year: 2014 -GO TO RELATED PUBMED ARTICLE -
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Piram M, Koné-Paut I, Lachmann HJ, Frenkel J, Ozen S, Kuemmerle-Deschner J, Stojanov S, Simon A, Finetti M, Sormani MP, Martini A, Gattorno M, Ruperto N on the behalf of EUROFEVER;EUROTRAPS and the Paediatric Rheumatology International Trials Organisation (PRINTO) networks.
Validation of the auto-inflammatory disease activity index (AIDAI) for hereditary recurrent fever syndromes.
Ann Rheum Dis 2014;73:2168-2173
Year: 2014 -GO TO RELATED PUBMED ARTICLE -
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Ozen S, Demirkaya E, Amaryan G, Koné-Paut I, Polat A, Woo P, Uziel Y, Modesto C, Finetti M, Quartier P, Papadopoulou-Alataki E, Al-Mayouf SM, Fabio G, Gallizzi R, Cantarini L, Frenkel J, Nielsen S, Hofer M, Insalaco A, Acikel C, Ozdogan H, Martini A, Ruperto N, Gattorno M; for the Paediatric Rheumatology International Trials Organisation (PRINTO) and the Eurofever Project.
Results from a multicentre international registry of familial Mediterranean fever: impact of environment on the expression of a monogenic disease in children.
Ann Rheum Dis 2014;73:662–667
Year: 2014 -GO TO RELATED PUBMED ARTICLE -
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Levy R, Gérard L, Kuemmerle-Deschner J, Lachmann HJ, Koné-Paut I, Cantarini L, Woo P, Naselli A, Bader-Meunier B, Insalaco A, Al-Mayouf SM, Ozen S, Hofer M, Frenkel J, Modesto C, Nikishina I, Schwarz T, Martino S, Meini A, Quartier P, Martini A, Ruperto N, Neven B, Gattorno M for the Paediatric Rheumatology International Trials Organisation (PRINTO) and Eurofever.
Phenotypic and genotypic characteristics of cryopyrin-associated periodic syndrome: a series of 136 patients from the Eurofever Registry.
Ann Rheum Dis 2015;74:2043–2049.
Year: 2015 -GO TO RELATED PUBMED ARTICLE -
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Federici S, Sormani , Ozen S, Lachmann HJ, Amaryan G, Woo P,6 Koné-Paut I, Dewarrat N, Cantarini L, Insalaco A, Uziel Y, Rigante D, Quartier P, Demirkaya E, Herlin T, Meini A, Fabio G, Kallinich T, Martino S, Butbul AY, Olivieri A, Kuemmerle-Deschner J, Neven B, Simon A, Ozdogan H, Touitou I, Frenkel J, Hofer M, Martini A, Ruperto N, Gattorno M for the Paediatric Rheumatology International Trials Organisation (PRINTO) and Eurofever Project.
Evidence-based provisional clinical classification criteria for autoinflammatory periodic fevers.
Ann Rheum Dis 2015; May;74(5):799-805
Year: 2015 -GO TO RELATED PUBMED ARTICLE -
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Demirkaya E, Saglam C, Turker T, Koné-Paut I, Woo P, Doglio M, Amaryan G, Frenkel J, Uziel Y, Insalaco A, Cantarini L, Hofer M, Boiu S, Duzova A, Modesto C, Bryant A, Rigante D, Papadopoulou-Alataki E, Guillaume-Czitrom S, Kuemmerle-Deschner J, Neven B, Lachmann H, Martini A, Ruperto N, Gattorno M, Ozen S for the Paediatric Rheumatology International Trials Organisations (PRINTO) and Eurofever Project.
Performance of Different Diagnostic Criteria for Familial Mediterranean Fever in Children with Periodic Fevers: Results from a Multicenter International Registry.
J Rheumatol 2016;43:154-160.
Year: 2016 -GO TO RELATED PUBMED ARTICLE -
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Ter Haar NM, Jeyaratnam J, Lachmann HJ, Simon A, Brogan PA, Doglio M, Cattalini M, Anton J, Modesto C, Quartier P, Hoppenreijs E, Martino S, Insalaco A, Cantarini L, Lepore L, Alessio M, Calvo Penades I, Boros C, Consolini R, Rigante D, Russo R, Pachlopnik Schmid J, Lane T, Martini A, Ruperto N, Frenkel J, Gattorno M; Paediatric Rheumatology International Trials Organisation (PRINTO) and Eurofever Project.
The phenotype and genotype of mevalonate kinase deficiency: a series of 114 cases from the Eurofever Registry
Arthritis Rheumatol [Epub ahead of print]
Year: 2016 -GO TO RELATED PUBMED ARTICLE -
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