Quality of Life - Long Term Outcome

Written By 3B Digital

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)

  • Ulrike Poetschger (Austria)

  • Geneviève Laureys (Belgium)

  • Ingeborg Ghooge (Belgium)

  • Frederic Acke (Belgium) 

  • Matthias Dewitte (Belgium)

  • Barbara Colsoul (Belgium)

  • Kim Vettenranta (Finland)

  • Dominique Valteau (France)

  • Claudia Pasqualini (France)

  • Gudrun Schleiermacher (France)

  • Angelika Eggert (Germany)

  • Thorsten Simon (Germany)

  • Barbara Hero (Germany)

  • Theresa Thole (Germany)

  • Georgia Kokkinou (Greece)

  • Vassiliki Tzotzola (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)

  • Catia Olianti (Italy)

  • Ricardo Haupt (Italy)

  • Ellen Ruud (Norway)

  • Maria Winther Gunnes (Norway)

  • Aleksandra Wieczorek (Poland)

  • Claudia Constantino (Portugal)

  • Maja Cesen (Slovenia)

  • Lucas Moreno (Spain)

  • Adela Cañete (Spain)

  • Maja Beck Popovic (Switzerland)

  • Diezi Manuel (Switzerland)

  • Alex Hoetink (The Netherlands)

  • Juliet Gray (United Kingdom)

  • Peppy Meunier Brock (United Kingdom)

  • Deborah Tweddle (United Kingdom)

  • Ramya Ramanujachar (United Kingdom)

  • Emma Potter (United Kingdom)

  • Helen Pearson (United Kingdom)

  • Fiona Herd (United Kingdom)

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 SIOPEN experience

  • Enhance interchange with other partners: PanCare, COG LEAHRN, National Registries

    • Promote Education on Quality of Life and Long-Term Outcome issues within SIOPEN and SIOP Europe and Internationally, for healthcare personnel, parents, pharma and decision-makers

  • Inform new protocol on QoL-LTO issues for best clinical practice and research

  • Cooperate with all relevant organizations internationally and Committees within SIOPEN for research and education

Interested in joining the Specialty committee?

Please first register to become a SIOPEN member and then contact the specialty committee chair and/or co-chair in order to join the committee.

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