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4 results on '"Sikken, Marijn"'

1. Recommendations for collaborative paediatric research including biobanking in Europe : a Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) initiative

Author

Kuemmerle-Deschner, Jasmin B., Hansmann, Sandra, Wulffraat, Nico M., Vastert, Sebastiaan J., Hens, Kristien, Anton, Jordi, Avcin, Tadej, Martini, Alberto, Koné-Paut, Isabelle, Uziel, Yosef, Ravelli, Angelo, Wouters, Carine, Shaw, David, Özen, Seza, Eikelberg, Andreas, Prakken, Berent J., Ruperto, Nicolino, Horneff, Gerd, Constantin, Tamas, Beresford, Michael W., Sikken, Marijn, Foster, Helen E., Haug, Iris, Schuller, Sabrina, Jägle, Christine, Benseler, Susanne M., Kuemmerle-Deschner, Jasmin B., Hansmann, Sandra, Wulffraat, Nico M., Vastert, Sebastiaan J., Hens, Kristien, Anton, Jordi, Avcin, Tadej, Martini, Alberto, Koné-Paut, Isabelle, Uziel, Yosef, Ravelli, Angelo, Wouters, Carine, Shaw, David, Özen, Seza, Eikelberg, Andreas, Prakken, Berent J., Ruperto, Nicolino, Horneff, Gerd, Constantin, Tamas, Beresford, Michael W., Sikken, Marijn, Foster, Helen E., Haug, Iris, Schuller, Sabrina, Jägle, Christine, and Benseler, Susanne M.

Published
2018

2. Recommendations for collaborative paediatric research including biobanking in Europe: a Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) initiative

Author

Cluster B, Onderzoek, Child Health, Regenerative Medicine and Stem Cells, Infection & Immunity, BOO, Divisieleiding O&O, Immuno/reuma onderzoek 1 (Vastert), Infectiezieken, Reumatologie, Reumatologie onderzoek 2, Immuno/reuma onderzoek 5 (Vastert2), Reumatologie patientenzorg, Immuno/reuma patientenzorg, Circulatory Health, Kuemmerle-Deschner, Jasmin B., Hansmann, Sandra, Wulffraat, Nico M., Vastert, Sebastiaan J., Hens, Kristien, Anton, Jordi, Avcin, Tadej, Martini, Alberto, Koné-Paut, Isabelle, Uziel, Yosef, Ravelli, Angelo, Wouters, Carine, Shaw, David, Özen, Seza, Eikelberg, Andreas, Prakken, Berent J., Ruperto, Nicolino, Horneff, Gerd, Constantin, Tamas, Beresford, Michael W., Sikken, Marijn, Foster, Helen E., Haug, Iris, Schuller, Sabrina, Jägle, Christine, Benseler, Susanne M., Cluster B, Onderzoek, Child Health, Regenerative Medicine and Stem Cells, Infection & Immunity, BOO, Divisieleiding O&O, Immuno/reuma onderzoek 1 (Vastert), Infectiezieken, Reumatologie, Reumatologie onderzoek 2, Immuno/reuma onderzoek 5 (Vastert2), Reumatologie patientenzorg, Immuno/reuma patientenzorg, Circulatory Health, Kuemmerle-Deschner, Jasmin B., Hansmann, Sandra, Wulffraat, Nico M., Vastert, Sebastiaan J., Hens, Kristien, Anton, Jordi, Avcin, Tadej, Martini, Alberto, Koné-Paut, Isabelle, Uziel, Yosef, Ravelli, Angelo, Wouters, Carine, Shaw, David, Özen, Seza, Eikelberg, Andreas, Prakken, Berent J., Ruperto, Nicolino, Horneff, Gerd, Constantin, Tamas, Beresford, Michael W., Sikken, Marijn, Foster, Helen E., Haug, Iris, Schuller, Sabrina, Jägle, Christine, and Benseler, Susanne M.

Published
2018

3. Recommendations for collaborative paediatric research including biobanking in Europe: a Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) initiative

Author

Kuemmerle-Deschner, Jasmin B, primary, Hansmann, Sandra, additional, Wulffraat, Nico M, additional, Vastert, Sebastiaan J, additional, Hens, Kristien, additional, Anton, Jordi, additional, Avcin, Tadej, additional, Martini, Alberto, additional, Koné-Paut, Isabelle, additional, Uziel, Yosef, additional, Ravelli, Angelo, additional, Wouters, Carine, additional, Shaw, David, additional, Özen, Seza, additional, Eikelberg, Andreas, additional, Prakken, Berent J, additional, Ruperto, Nicolino, additional, Horneff, Gerd, additional, Constantin, Tamas, additional, Beresford, Michael W, additional, Sikken, Marijn, additional, Foster, Helen E, additional, Haug, Iris, additional, Schuller, Sabrina, additional, Jägle, Christine, additional, and Benseler, Susanne M, additional

Published
2017
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4. Recommendations for collaborative paediatric research including biobanking in Europe: a Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) initiative.

Author

Kuemmerle-Deschner JB, Hansmann S, Wulffraat NM, Vastert SJ, Hens K, Anton J, Avcin T, Martini A, Koné-Paut I, Uziel Y, Ravelli A, Wouters C, Shaw D, Özen S, Eikelberg A, Prakken BJ, Ruperto N, Horneff G, Constantin T, Beresford MW, Sikken M, Foster HE, Haug I, Schuller S, Jägle C, and Benseler SM

Subjects
Biological Specimen Banks standards, Biomedical Research organization & administration, Biomedical Research standards, Child, Consensus, Ethics, Research, Europe, Humans, Intersectoral Collaboration, Pediatrics standards, Practice Guidelines as Topic, Biological Specimen Banks organization & administration, Biomedical Research methods, Pediatrics organization & administration, Rheumatic Diseases therapy, Rheumatology organization & administration
Abstract

Innovative research in childhood rheumatic diseases mandates international collaborations. However, researchers struggle with significant regulatory heterogeneity; an enabling European Union (EU)-wide framework is missing. The aims of the study were to systematically review the evidence for best practice and to establish recommendations for collaborative research. The Paediatric Rheumatology European Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) project enabled a scoping review and expert discussion, which then informed the systematic literature review. Published evidence was synthesised; recommendations were drafted. An iterative review process and consultations with Ethics Committees and European experts for ethical and legal aspects of paediatric research refined the recommendations. SHARE experts and patient representatives vetted the proposed recommendations at a consensus meeting using Nominal Group Technique. Agreement of 80% was mandatory for inclusion. The systematic literature review returned 1319 records. A total of 223 full-text publications plus 22 international normative documents were reviewed; 85 publications and 16 normative documents were included. A total of 21 recommendations were established including general principles (1-3), ethics (4-7), paediatric principles (8 and 9), consent to paediatric research (10-14), paediatric databank and biobank (15 and 16), sharing of data and samples (17-19), and commercialisation and third parties (20 and 21). The refined recommendations resulted in an agreement of >80% for all recommendations. The SHARE initiative established the first recommendations for Paediatric Rheumatology collaborative research across borders in Europe. These provide strong support for an urgently needed European framework and evidence-based guidance for its implementation. Such changes will promote research in children with rheumatic diseases., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Published
2018
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