Participants and Structure of the project

Participants

Principal Investigator: Marco Gattorno, MD (Italy)

Associated partners: Joost Frenkel (The Netherland),  Seza Ozen (Turkey), Isabelle Kone-Paut (France), Patricia.Woo (UK), Fabrizio De Benedetti (Italy), Hermann.Girschick (Germany), Carine Wouters (Belgium), Benedicte Neven (France).

Collaborating partners: Michael Hofer (CH), Veronique Hentgen (France), Carlos Rose (USA), Huri Ozdogan (Turkey), Pavla Dolezalova (Czech Republic), Natasa Toplak (Slovenia), Richard Vesely (Slovak Republic), Juantxo Arostegui (Spain), I Touitou (France), Helen Lachmann (UK), Anna Simon (The Netherland).

Steering Committee: M. Gattorno, J. Frenkel, S. Ozen, N. Ruperto, H. Lachmann

Specific role of Associated and Collaborating partner in the Project

Disease-PI’s:

  • Behçet disease (I. Konè-Paut)
  • Blau’s/Early onset sarcoidosis (C. Wouters, Belgium; C. Rose, USA)
  • Cryopyrin associated periodic syndrome (CAPS) (B. Neven, France; J. Kuemmerle-Deschner, Germany)
  • Chronic recurrent multifocal osteomyelitis (CRMO) (H. Girschick, A. Jansson, Germany)
  • Deficiency of IL-1 receptor antagonist (J Frenkel, The Netherlands)
  • Familial Mediterrean Fever (FMF) (S. Ozen, H. Ozdogan, Turkey)
  • Mevalonate kinase deficency (MKD) (J. Frenkel, A. Simon, The Netherlands)
  • NLRP12-associated periodic syndrome (M. Gattorno, Italy; V. Hentgen, France)
  • Pyogenic Sterile Arthritis, Pyoderma Gangrenosum and Acne (PAPA) syndrome (F. De Benedetti, Italy)
  • Tumor necrosis factor receptor-associated periodic syndrome (TRAPS) (M. Gattorno, Italy; P. Woo, H. Lachmann, United Kingdom)
  • Periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis (PFAPA) syndrome and Undefined Periodic fever (M Hofer, Switzerland; S. Stojanov, Germany)
  • CANDLE syndrome (P. Brogan, United Kingdom)
  • AISLE (H. Ozgodan, Turkey)
  • Schnitzler syndrome ( H.De Koning, with the support of Anna Simon, The Netherlands)
  • Majeed’s syndrome (T. Herlin, Denmark)

Representative for Eastern European Countries
P. Dolezalova, N. Toplak, R Vesely

Representative of other ongoing linked initiatives:
Eurotraps (I Touitou, H. Lachmann, M. Gattorno)
HyperIgD registry (A. Simon)

Technical support (elaboration of the web-based registry and technical assistance, management of IRB’s and informed consent)
PRINTO (N. Ruperto)

 

General structure of the Eurofever Project