Composition
Chair:
- Vassilios Papadakis (Greece) vpapadak@otenet.gr
Vice chair:
- Lieve Tytgat (The Netherlands) g.a.m.tytgat@prinsesmaximacentrum.nl
Members:
Ruth Ladenstein (Austria), Edit Bardi (Austria), Geneviève Laureys (Belgium), Kim Vettenranta (Finland), Dominique Valteau (France), Lucas Moreno (France), Claudia Pasqualini (France), Gudrun Schleiermacher (France), Angelika Eggert (Germany), Thorsten Simon (Germany), Barbara Hero (Germany), Theresa Thole (Germany), Vassilios Papadakis (Greece), Godfrey Chan (Hong-Kong), Cormac Owens (Ireland), Shifra Ash (Israel), Alberto Garaventa (Italy), Andrea Di Cataldo (Italy), Marta Giorgia Podda (Italy), Monica Muraca (Italy), Ellen Ruud (Norway), Maria Winther Gunnes (Norway), Aleksandra Wieczorek (Poland), C Constantino (Portugal), Maja Cesen- Mazic (Slovenia), Adela Canete (Spain), Maja Beck-Popovic (Switzerland), Diezi Manuel (Switzerland), Lieve Tytgat (The Netherlands), Alex Hoetink (The Netherlands), Juliet Gray (UK), Peppy Meunier Brock (UK), Deborah Tweddle (UK), Ramya Ramanujachar (UK), Emma Potter (UK), Helen Pearson (UK), Fiona Herd (UK).
Aims
- Create a SIOPEN Registry for the long outcome/ post-protocol evaluation and monitoring of all NBL patients
- Specific toxicities (ototoxicity, second malignancies, endocrine-Growth-myoskeletal outcome, renal toxicity): Enhance patient registration, data analysis, publication of SIOPE experience
- Enhance interchange with other partners: PanCare, COG LEAHRN, National Registries
