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109 results on '"van Royen, Annet"'

1. Collaborative research in myositis-related disorders: MIHRA, a global shared community model

Author

Geneeskunde, Immuno/reuma patientenzorg, Child Health, Infection & Immunity, Saketkoo, Lesley Ann, Paik, Julie J, Alexanderson, Helene, Dimachkie, Mazen M, Ernste, Floranne C, Naddaf, Elie, Shafranski, Barbara, Gupta, Latika, Mecoli, Christopher A, Saygin, Didem, Albayda, Jemima, Basharat, Pari, Day, Jessica A, Valenzuela, Antonia, Bromley, Rachel, de Groot, Ingrid, Edison, Suzanne E, Lanis, Aviya, Lood, Christian, Regardt, Malin, Yi, Belina Y, Benitez, Alejandro C, Chinoy, Hector, Christopher-Stine, Lisa, Isenberg, David A, Lang, Bianca, Oddis, Chester V, van Royen, Annet, Vencovsky, Jiri, Werth, Victoria P, Machado, Pedro M, Geneeskunde, Immuno/reuma patientenzorg, Child Health, Infection & Immunity, Saketkoo, Lesley Ann, Paik, Julie J, Alexanderson, Helene, Dimachkie, Mazen M, Ernste, Floranne C, Naddaf, Elie, Shafranski, Barbara, Gupta, Latika, Mecoli, Christopher A, Saygin, Didem, Albayda, Jemima, Basharat, Pari, Day, Jessica A, Valenzuela, Antonia, Bromley, Rachel, de Groot, Ingrid, Edison, Suzanne E, Lanis, Aviya, Lood, Christian, Regardt, Malin, Yi, Belina Y, Benitez, Alejandro C, Chinoy, Hector, Christopher-Stine, Lisa, Isenberg, David A, Lang, Bianca, Oddis, Chester V, van Royen, Annet, Vencovsky, Jiri, Werth, Victoria P, and Machado, Pedro M

Published
2024

2. Collaborative research in myositis-related disorders: MIHRA, a global shared community model

Author

Saketkoo, Lesley Ann, primary, Paik, Julie J., additional, Alexanderson, Helene, additional, Dimachkie, Mazen M., additional, Ernste, Floranne C., additional, Naddaf, Elie, additional, Shafranski, Barbara, additional, Gupta, Latika, additional, Mecoli, Christopher A., additional, Saygin, Didem, additional, Albayda, Jemima, additional, Basharat, Pari, additional, Day, Jessica A., additional, Valenzuela, Antonia, additional, Bromley, Rachel, additional, de Groot, Ingrid, additional, Edison, Suzanne E., additional, Lanis, Aviya, additional, Lood, Christian, additional, Regardt, Malin, additional, Yi, Belina Y., additional, Benitez, Alejandro C., additional, Chinoy, Hector, additional, Christopher-Stine, Lisa, additional, Isenberg, David A., additional, Lang, Bianca, additional, Oddis, Chester V., additional, van Royen, Annet, additional, Vencovsky, Jiri, additional, Werth, Victoria P., additional, and Machado, Pedro M., additional

Published
2024
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4. Interdisciplinariteit als wapen tegen fake news?

Author

Maas, Annemieke, Gaillard, Stefan, Charldorp, Tessa Cyrina, Christophe, Nirav, Geelen van, Stefan, de Jonge, Roos, Milota, Megan, van Royen, Annet, Maas, Annemieke, Gaillard, Stefan, Charldorp, Tessa Cyrina, Christophe, Nirav, Geelen van, Stefan, de Jonge, Roos, Milota, Megan, and van Royen, Annet

Abstract

In 2020 nam een koppel in de Verenigde Staten chloroquinefosfaat in, vanwege desinformatie omtrent de effectiviteit van chloroquine voor de behandeling van COVID-19. De man stierf, de vrouw belandde in kritieke conditie in het ziekenhuis.1 Een dramatisch gevolg van fake news. Professionals in het gezondheidsdomein krijgen te maken met zorggerelateerde desinformatie en misinformatie. Het is essentieel dat zij deze informatie leren herkennen en er op de juiste manier mee leren omgaan.

Published
2022

5. Interdisciplinariteit als wapen tegen fake news?

Author

LS communicatie- en informatiewetenschap, ILS L&C, Maas, Annemieke, Gaillard, Stefan, Charldorp, Tessa Cyrina, Christophe, Nirav, Geelen van, Stefan, de Jonge, Roos, Milota, Megan, van Royen, Annet, LS communicatie- en informatiewetenschap, ILS L&C, Maas, Annemieke, Gaillard, Stefan, Charldorp, Tessa Cyrina, Christophe, Nirav, Geelen van, Stefan, de Jonge, Roos, Milota, Megan, and van Royen, Annet

Published
2022

6. Interdisciplinarity as weapon against fake news?

Author

Maas, Annemieke, Gaillard, Stefan, Charldorp, Tessa Cyrina, Christophe, Nirav, Geelen van, Stefan, de Jonge, Roos, Milota, Megan, van Royen, Annet, LS communicatie- en informatiewetenschap, and ILS L&C

Abstract

In 2020 nam een koppel in de Verenigde Staten chloroquinefosfaat in, vanwege desinformatie omtrent de effectiviteit van chloroquine voor de behandeling van COVID-19. De man stierf, de vrouw belandde in kritieke conditie in het ziekenhuis.1 Een dramatisch gevolg van fake news. Professionals in het gezondheidsdomein krijgen te maken met zorggerelateerde desinformatie en misinformatie. Het is essentieel dat zij deze informatie leren herkennen en er op de juiste manier mee leren omgaan.

Published
2022

7. Consensus-based recommendations for the management of juvenile systemic sclerosis

Author

Utrecht Valorisatie Centrum, Immuno/reuma patientenzorg, Child Health, Infection & Immunity, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Foeldvari, Ivan, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen, Boros, Christina, Chaitow, Jeffrey, Constantin, Tamas, Kasapcopur, Ozgur, Knupp Feitosa de Oliveira, Sheila, Pilkington, Clarissa, Toplak, Natasa, van Royen, Annet, Saad Magalhaes, Claudia, Vastert, Sebastiaan J, Wulffraat, Nico, Zulian, Francesco, Utrecht Valorisatie Centrum, Immuno/reuma patientenzorg, Child Health, Infection & Immunity, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Foeldvari, Ivan, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen, Boros, Christina, Chaitow, Jeffrey, Constantin, Tamas, Kasapcopur, Ozgur, Knupp Feitosa de Oliveira, Sheila, Pilkington, Clarissa, Toplak, Natasa, van Royen, Annet, Saad Magalhaes, Claudia, Vastert, Sebastiaan J, Wulffraat, Nico, and Zulian, Francesco

Published
2021

8. European consensus-based recommendations for the diagnosis and treatment of rare paediatric vasculitides - the SHARE initiative (vol 58, pg 656, 2019)

Author

de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W

Published
2020

9. European consensus-based recommendations for the diagnosis and treatment of rare paediatric vasculitides – the SHARE initiative: This is a correction to: Rheumatology, Volume 58, Issue 4, April 2019, Pages 656–671, https://doi.org/10.1093/rheumatology/key322

Author

Medical Humanities Onderzoek Team 2, JC onderzoeksprogramma Methodologie, Child Health, Immuno/reuma patientenzorg, Infection & Immunity, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, De Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M., Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D., McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, Van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W., Medical Humanities Onderzoek Team 2, JC onderzoeksprogramma Methodologie, Child Health, Immuno/reuma patientenzorg, Infection & Immunity, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, De Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M., Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D., McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, Van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W.

Published
2020

11. Consensus-based recommendations for the management of juvenile systemic sclerosis

Author

Foeldvari, Ivan, primary, Culpo, Roberta, additional, Sperotto, Francesca, additional, Anton, Jordi, additional, Avcin, Tadej, additional, Baildam, Eileen, additional, Boros, Christina, additional, Chaitow, Jeffrey, additional, Constantin, Tamas, additional, Kasapcopur, Ozgur, additional, Knupp Feitosa de Oliveira, Sheila, additional, Pilkington, Clarissa, additional, Toplak, Natasa, additional, van Royen, Annet, additional, Saad Magalhaes, Claudia, additional, Vastert, Sebastiaan J, additional, Wulffraat, Nico, additional, and Zulian, Francesco, additional

Published
2020
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12. European consensus-based recommendations for the diagnosis and treatment of rare paediatric vasculitides – the SHARE initiative

Author

de Graeff, Nienke, primary, Groot, Noortje, primary, Brogan, Paul, primary, Ozen, Seza, primary, Avcin, Tadej, primary, Bader-Meunier, Brigitte, primary, Dolezalova, Pavla, primary, Feldman, Brian M, primary, Kone-Paut, Isabelle, primary, Lahdenne, Pekka, primary, Marks, Stephen D, primary, McCann, Liza, primary, Pilkington, Clarissa, primary, Ravelli, Angelo, primary, van Royen, Annet, primary, Uziel, Yosef, primary, Vastert, Bas, primary, Wulffraat, Nico, primary, Kamphuis, Sylvia, primary, and Beresford, Michael W, primary

Published
2020
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15. European consensus-based recommendations for diagnosis and treatment of immunoglobulin A vasculitis-the SHARE initiative

Author

Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W

Published
2019

16. Consensus-based recommendations for the management of juvenile localised scleroderma

Author

Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., Foeldvari, Ivan, Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., and Foeldvari, Ivan

Published
2019

17. European consensus-based recommendations for the diagnosis and treatment of rare paediatric vasculitides - the SHARE initiative

Author

de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W

Published
2019

18. European consensus-based recommendations for diagnosis and treatment of immunoglobulin A vasculitis-the SHARE initiative

Author

Immuno/reuma onderzoek 1 (Vastert), Child Health, JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma patientenzorg, Infection & Immunity, Cluster B, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, Immuno/reuma onderzoek 1 (Vastert), Child Health, JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma patientenzorg, Infection & Immunity, Cluster B, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W

Published
2019

19. European consensus-based recommendations for the diagnosis and treatment of rare paediatric vasculitides - the SHARE initiative

Author

JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma onderzoek 1 (Vastert), Child Health, Cluster B, Immuno/reuma patientenzorg, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma onderzoek 1 (Vastert), Child Health, Cluster B, Immuno/reuma patientenzorg, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W

Published
2019

20. Consensus-based recommendations for the management of juvenile localised scleroderma

Author

Immuno/reuma patientenzorg, Child Health, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), CTI Van Loosdregt, Immunologie/Reumatologie, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Onderzoek, Regenerative Medicine and Stem Cells, Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., Foeldvari, Ivan, Immuno/reuma patientenzorg, Child Health, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), CTI Van Loosdregt, Immunologie/Reumatologie, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Onderzoek, Regenerative Medicine and Stem Cells, Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., and Foeldvari, Ivan

Published
2019

22. European consensus-based recommendations for diagnosis and treatment of immunoglobulin A vasculitis—the SHARE initiative

Author

Ozen, Seza, primary, Marks, Stephen D., additional, Brogan, Paul, additional, Groot, Noortje, additional, de Graeff, Nienke, additional, Avcin, Tadej, additional, Bader-Meunier, Brigitte, additional, Dolezalova, Pavla, additional, Feldman, Brian M., additional, Kone-Paut, Isabelle, additional, Lahdenne, Pekka, additional, McCann, Liza, additional, Pilkington, Clarissa, additional, Ravelli, Angelo, additional, van Royen, Annet, additional, Uziel, Yosef, additional, Vastert, Bas, additional, Wulffraat, Nico, additional, Kamphuis, Sylvia, additional, and Beresford, Michael W., additional

Published
2019
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23. Consensus-based recommendations for the management of juvenile localised scleroderma

Author

Zulian, Francesco, primary, Culpo, Roberta, additional, Sperotto, Francesca, additional, Anton, Jordi, additional, Avcin, Tadej, additional, Baildam, Eileen M, additional, Boros, Christina, additional, Chaitow, Jeffrey, additional, Constantin, Tamàs, additional, Kasapcopur, Ozgur, additional, Knupp Feitosa de Oliveira, Sheila, additional, Pilkington, Clarissa A, additional, Russo, Ricardo, additional, Toplak, Natasa, additional, van Royen, Annet, additional, Saad Magalhães, Claudia, additional, Vastert, Sebastiaan J, additional, Wulffraat, Nico M, additional, and Foeldvari, Ivan, additional

Published
2019
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24. European consensus-based recommendations for the diagnosis and treatment of rare paediatric vasculitides – the SHARE initiative

Author

de Graeff, Nienke, primary, Groot, Noortje, additional, Brogan, Paul, additional, Ozen, Seza, additional, Avcin, Tadej, additional, Bader-Meunier, Brigitte, additional, Dolezalova, Pavla, additional, Feldman, Brian M, additional, Kone-Paut, Isabelle, additional, Lahdenne, Pekka, additional, Marks, Stephen D, additional, McCann, Liza, additional, Pilkington, Clarissa, additional, Ravelli, Angelo, additional, van Royen, Annet, additional, Uziel, Yosef, additional, Vastert, Bas, additional, Wulffraat, Nico, additional, Kamphuis, Sylvia, additional, and Beresford, Michael W, additional

Published
2018
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25. 2017 European League Against Rheumatism/American College of Rheumatology classification criteria for adult and juvenile idiopathic inflammatory myopathies and their major subgroups

Author

Lundberg, Ingrid E, Tjärnlund, Anna, Bottai, Matteo, Werth, Victoria P, Pilkington, Clarissa, de Visser, Marianne, Alfredsson, Lars, Amato, Anthony A, Barohn, Richard J, Liang, Matthew H., Singh, Jasvinder A., Aggarwal, Rohit, Arnardottir, Snjolaug, Chinoy, Hector, Cooper, Robert G., Dankó, Katalin, Dimachkie, Mazen, Feldman, Brian M., Torre, Ignacio Garcia-De La, Gordon, Patrick, Hayashi, Taichi, Katz, James D, Kohsaka, Hitoshi, Lachenbruch, Peter A., Lang, Bianca A, Li, Yuhui, Oddis, Chester V., Olesinska, Marzena, Reed, Ann M., Rutkowska-Sak, Lidia, Sanner, Helga, Selva-O'Callaghan, Albert, Song, Yeong-Wook, Vencovsky, Jiri, Ytterberg, Steven R., Miller, Frederick W., Rider, Lisa G., International Myositis Classification Criteria Project consortium, The Euromyositis register and The Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDRG) (UK and Ireland), van Royen, Annet, Lundberg, Ingrid E, Tjärnlund, Anna, Bottai, Matteo, Werth, Victoria P, Pilkington, Clarissa, de Visser, Marianne, Alfredsson, Lars, Amato, Anthony A, Barohn, Richard J, Liang, Matthew H., Singh, Jasvinder A., Aggarwal, Rohit, Arnardottir, Snjolaug, Chinoy, Hector, Cooper, Robert G., Dankó, Katalin, Dimachkie, Mazen, Feldman, Brian M., Torre, Ignacio Garcia-De La, Gordon, Patrick, Hayashi, Taichi, Katz, James D, Kohsaka, Hitoshi, Lachenbruch, Peter A., Lang, Bianca A, Li, Yuhui, Oddis, Chester V., Olesinska, Marzena, Reed, Ann M., Rutkowska-Sak, Lidia, Sanner, Helga, Selva-O'Callaghan, Albert, Song, Yeong-Wook, Vencovsky, Jiri, Ytterberg, Steven R., Miller, Frederick W., Rider, Lisa G., International Myositis Classification Criteria Project consortium, The Euromyositis register and The Juvenile Dermatomyositis Cohort Biomarker Study and Repository (JDRG) (UK and Ireland), and van Royen, Annet

Published
2017

26. 2017 European League Against Rheumatism/American College of Rheumatology Classification Criteria for Adult and Juvenile Idiopathic Inflammatory Myopathies and Their Major Subgroups

Author

Cluster B, Child Health, Infection & Immunity, Lundberg, Ingrid E, Tjärnlund, Anna, Bottai, Matteo, Werth, Victoria P, Pilkington, Clarissa, de Visser, Marianne, Alfredsson, Lars, Amato, Anthony A, Barohn, Richard J, Liang, Matthew H., Singh, Jasvinder A., Aggarwal, Rohit, Arnardottir, Snjolaug, Chinoy, Hector, Cooper, Robert G., Dankó, Katalin, Dimachkie, Mazen, Feldman, Brian M., Garcia-De La Torre, Ignacio, Gordon, Patrick, Hayashi, Taichi, Katz, James D, Kohsaka, Hitoshi, Lachenbruch, Peter A., Lang, Bianca A, Li, Yuhui, Oddis, Chester V., Olesinska, Marzena, Reed, Ann M., Rutkowska-Sak, Lidia, Sanner, Helga, Selva-O'Callaghan, Albert, Song, Yeong-Wook, Vencovsky, Jiri, Ytterberg, Steven R., Miller, Frederick W., Rider, Lisa G., International Myositis Classification Criteria Project Consortium, the Euromyositis Register, and the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (UK and Ireland), van Royen, Annet, Cluster B, Child Health, Infection & Immunity, Lundberg, Ingrid E, Tjärnlund, Anna, Bottai, Matteo, Werth, Victoria P, Pilkington, Clarissa, de Visser, Marianne, Alfredsson, Lars, Amato, Anthony A, Barohn, Richard J, Liang, Matthew H., Singh, Jasvinder A., Aggarwal, Rohit, Arnardottir, Snjolaug, Chinoy, Hector, Cooper, Robert G., Dankó, Katalin, Dimachkie, Mazen, Feldman, Brian M., Garcia-De La Torre, Ignacio, Gordon, Patrick, Hayashi, Taichi, Katz, James D, Kohsaka, Hitoshi, Lachenbruch, Peter A., Lang, Bianca A, Li, Yuhui, Oddis, Chester V., Olesinska, Marzena, Reed, Ann M., Rutkowska-Sak, Lidia, Sanner, Helga, Selva-O'Callaghan, Albert, Song, Yeong-Wook, Vencovsky, Jiri, Ytterberg, Steven R., Miller, Frederick W., Rider, Lisa G., International Myositis Classification Criteria Project Consortium, the Euromyositis Register, and the Juvenile Dermatomyositis Cohort Biomarker Study and Repository (UK and Ireland), and van Royen, Annet

Published
2017

28. Serum inflammatory mediators correlate with disease activity in electrical status epilepticus in sleep (ESES) syndrome

Author

van den Munckhof, Bart, de Vries, Evelien E, Braun, Kees P J, Boss, H Myrthe, Willemsen, Michèl A, van Royen, Annet, de Jager, Wilco, and Jansen, Floor E

Subjects
CSWS, Research Support, Non-U.S. Gov't, ESES, Journal Article, Cytokines, Continuous spikes and waves during sleep, Electrical status epilepticus during sleep, Landau-Kleffner syndrome
Abstract

We aimed to study serum cytokine levels in 11 electrical status epilepticus in sleep (ESES) patients and 20 healthy control children. Patients showed significantly higher levels of interleukin (IL)-1α, IL-6, IL-10, chemokine (C-C motif) ligand (CCL)2 and chemokine (C-X-C motif) ligand (CXCL)8/IL-8 than controls, while macrophage migration inhibitory factor (MIF) and CCL3 were significantly lower. Follow-up analyses in five patients revealed a significant decrease of IL-6 levels after immunomodulating treatment. IL-6 changes were accompanied by clear improvement of electroencephalography (EEG) patterns and neuropsychological evaluation. We hypothesize that IL-6 correlates with disease activity and immunomodulating treatment efficacy.

Published
2016

29. Serum inflammatory mediators correlate with disease activity in electrical status epilepticus in sleep (ESES) syndrome

Author

Opleiding Neurologie, Brain, Zorgeenheid Vaatchirurgie Medisch, ZL Kinder Ner en Nec Medisch, ZL Cerebrovasculaire Ziekten Medisch, Child Health, Reumatologie patientenzorg, Reumatologie onderzoek 2, CTI Vastert, ZL Algemene Neurologie Medisch, van den Munckhof, Bart, de Vries, Evelien E, Braun, Kees P J, Boss, H Myrthe, Willemsen, Michèl A, van Royen, Annet, de Jager, Wilco, Jansen, Floor E, Opleiding Neurologie, Brain, Zorgeenheid Vaatchirurgie Medisch, ZL Kinder Ner en Nec Medisch, ZL Cerebrovasculaire Ziekten Medisch, Child Health, Reumatologie patientenzorg, Reumatologie onderzoek 2, CTI Vastert, ZL Algemene Neurologie Medisch, van den Munckhof, Bart, de Vries, Evelien E, Braun, Kees P J, Boss, H Myrthe, Willemsen, Michèl A, van Royen, Annet, de Jager, Wilco, and Jansen, Floor E

Published
2016

30. Preparing children for blood sampling using a serious gaming app (Prik!) decreases perceived pain and distress

Author

Sociale pediatrie onderzoek 1, Child Health, Reumatologie patientenzorg, Infection & Immunity, Other research (not in main researchprogram), CDL Staf Patiëntenzorg KC, de Jong, AM, van Royen, Annet, Schouten, MCM, de Vooght, KMK, Sociale pediatrie onderzoek 1, Child Health, Reumatologie patientenzorg, Infection & Immunity, Other research (not in main researchprogram), CDL Staf Patiëntenzorg KC, de Jong, AM, van Royen, Annet, Schouten, MCM, and de Vooght, KMK

Published
2016

31. Autologous stem cell transplantation aids autoimmune patients by functional renewal and TCR diversification of regulatory T cells

Author

Child Health, Arts-assistenten Kinderen, MMB opleiding Arts microbioloog, CTI Van Wijk, Infection & Immunity, Immuno/reuma onderzoek 2 (Boes), CTI Boes, Reumatologie, Reumatologie patientenzorg, Cluster B, Regenerative Medicine and Stem Cells, Immuno/reuma patientenzorg, Immuno/reuma onderzoek 1 (Vastert), Circulatory Health, CTI Vastert, Reumatologie onderzoek 2, Divisieleiding O&O, CDL Celdiagnostiek, Delemarre, Eveline M., Van Den Broek, Theo, Mijnheer, Gerdien, Meerding, Jenny, Wehrens, Ellen J., Olek, Sven, Boes, Marianne, Van Herwijnen, Martijn J C, Broere, Femke, van Royen, Annet, Wulffraat, Nico W., Prakken, Berent J., Spierings, Eric, Van Wijk, Femke, Child Health, Arts-assistenten Kinderen, MMB opleiding Arts microbioloog, CTI Van Wijk, Infection & Immunity, Immuno/reuma onderzoek 2 (Boes), CTI Boes, Reumatologie, Reumatologie patientenzorg, Cluster B, Regenerative Medicine and Stem Cells, Immuno/reuma patientenzorg, Immuno/reuma onderzoek 1 (Vastert), Circulatory Health, CTI Vastert, Reumatologie onderzoek 2, Divisieleiding O&O, CDL Celdiagnostiek, Delemarre, Eveline M., Van Den Broek, Theo, Mijnheer, Gerdien, Meerding, Jenny, Wehrens, Ellen J., Olek, Sven, Boes, Marianne, Van Herwijnen, Martijn J C, Broere, Femke, van Royen, Annet, Wulffraat, Nico W., Prakken, Berent J., Spierings, Eric, and Van Wijk, Femke

Published
2016

32. Health Related Quality Of Life Measure In Systemic Pediatric Rheumatic Diseases And Its Translation To Different Languages: An International Collaboration

Author

Members of our collaborative group, Moorthy, Lakshmi Nandini, Roy, Elizabeth, Kurra, Vamsi, Peterson, Margaret GE, Hassett, Afton L, Lehman, Thomas JA, Scott, Christiaan, El-Ghoneimy, Dalia, Saad, Shereen, El Feky, Reem, Al-Mayouf, Sulaiman, Dolezalova, Pavla, Malcova, Hana, Herlin, Troels, Nielsen, Susan, Wulffraat, Nico, van Royen, Annet, Marks, Stephen D, Belot, Alexandre, Brunner, Jurgen, Huemer, Christian, Foeldvari, Ivan, Horneff, Gerd, Saurenman, Traudel, Schroeder, Silke, Pratsidou-Gertsi, Polyxeni, Trachana, Maria, Uziel, Yosef, Aggarwal, Amita, Constantin, Tamas, Cimaz, Rolando, Giani, Theresa, Cantarini, Luca, Falcini, Fernanda, Manzoni, Silvia Magni, Ravelli, Angelo, Rigante, Donato, Zulian, Fracnceso, Miyamae, Takako, Yokota, Shumpei, Sato, Juliana, Magalhaes, Claudia S, Len, Claudio A, Appenzeller, Simone, Knupp, Sheila Oliveira, Rodrigues, Marta Cristine, Sztajnbok, Flavio, de Almeida, Rozana Gasparello, de Jesus, Adriana Almeida, de Arruda Campos, Lucia Maria, Silva, Clovis, Lazar, Calin, Susic, Gordana, Avcin, Tadej, Cuttica, Ruben, Burgos-Vargas, Ruben, Faugier, Enrique, Anton, Jordi, Modesto, Consuelo, Vazquez, Liza, Barillas, Lilliana, Barinstein, Laura, Sterba, Gary, Maldonado, Irama, Ozen, Seza, Kasapcopur, Ozgur, Demirkaya, Erkan, Benseler, Susa, Çocuk Sağlığı ve Hastalıkları, Rutgers State Univ, Hosp Special Surg, Univ Michigan, Red Cross War Mem Childrens Hosp, Ain Shams Univ, King Faisal Specialist Hosp & Res Ctr, Charles Univ Prague, Gen Univ Hosp, Univ Hosp Motol, Aarhus Univ, Rigshosp, Univ Med Ctr, Wilhelmina Childrens Hosp, Great Ormond St Hosp Sick Children, Lyon Univ, Med Univ Innsbruck, Prim Univ Doz, Hamburg Ctr Pediat & Adolescence Rheumatol, Asklepios Clin Sankt, Univ Zurich, Aristotle Univ Thessaloniki, Israel Meir Hosp, Sanjay Gandhi Postgrad Inst Med Sci, Semmelweis Univ, Anna Meyer Hosp, Univ Siena, Univ Florence, Osped Pediat Bambino Gesu, Univ Genoa Pediat II Reumatol, Univ Cattolica Sacro Cuore, Univ Padua, Yokohama City Univ, Universidade Estadual Paulista (Unesp), Universidade Federal de São Paulo (UNIFESP), Universidade Estadual de Campinas (UNICAMP), Universidade Federal do Rio de Janeiro (UFRJ), Univ Estado do, Universidade de São Paulo (USP), Childrens Inst, Clin Pediat I, Inst Rheumatol, Univ Childrens Hosp, Head Rheumatol Hosp Pedro Elizalde, Hosp Gen Mexico City, Hosp Infantil Mexico Fed Gomez, Hosp San Juan Dios, Hosp Univ Valle Hebron, Mt Sinai Med Ctr, Complejo Hosp Univ Ruiz & Paez, Hacettepe Univ, Istanbul Univ, FMF Arthrit Vasculitis & Orphan Dis Res Ctr, Univ Calgary, and Universitat de Barcelona

Subjects
Male, Research design, Pediatrics, Settore MED/16 - REUMATOLOGIA, Turkish, International Cooperation, German, Quality of life, immune system diseases, Surveys and Questionnaires, Immunology and Allergy, Pediatric rheumatology, Child, skin and connective tissue diseases, Language, Inflamació, humanities, Treatment Outcome, Qualitat de vida, Research Design, Child, Preschool, Antirheumatic Agents, language, Female, Immunosuppressive Agents, geographic locations, medicine.medical_specialty, Adolescent, Psychometrics, Short Report, Danish, Rheumatology, Feasibility Studies, Humans, Quality of Life, Rheumatic Diseases, Translating, medicine, Pediatrics, Perinatology, and Child Health, Reumatologia pediàtrica, Preschool, Inflammation, Lupus erythematosus, business.industry, medicine.disease, language.human_language, Family medicine, Pediatrics, Perinatology and Child Health, Xhosa, Portuguese, business
Abstract

Made available in DSpace on 2015-03-18T15:55:50Z (GMT). No. of bitstreams: 0 Previous issue date: 2014-11-25Bitstream added on 2015-03-18T16:28:34Z : No. of bitstreams: 1 WOS000346520700001.pdf: 205186 bytes, checksum: c29e39dcb1d87ab0b78ebf2affc7a14b (MD5) Background: Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases.Findings: We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY (c)) to Simple Measure of Impact of Illness in Youngsters (SMILY (c)-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY (c)-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n= 15) and 17 parents participated. The mean age was 12 +/- 4 years, with median disease duration of 21 months (1-172 months). We translated SMILY (c)-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa.Conclusion: SMILY (c)-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY (c)-Illness with its available translations may be used as useful adjuncts to clinical practice and research. Rutgers State Univ, Robert Wood Johnson Med Sch, New Brunswick, NJ 08903 USA Rutgers State Univ, Child Hlth Inst New Jersey, New Brunswick, NJ 08901 USA Hosp Special Surg, New York, NY 10021 USA Univ Michigan, Ann Arbor, MI 48109 USA Red Cross War Mem Childrens Hosp, Cape Town, South Africa Ain Shams Univ, Pediat Allergy Immunol & Rheumatol Unit, Cairo, Egypt Ain Shams Univ, Pediat Rheumatol Pediat Allergy Immunol & Rheum, Cairo, Egypt King Faisal Specialist Hosp & Res Ctr, Riyadh 11211, Saudi Arabia Charles Univ Prague, Prague, Czech Republic Gen Univ Hosp, Prague, Czech Republic Univ Hosp Motol, Dept Pediat, Prague, Czech Republic Aarhus Univ, Hosp Skejby, Aarhus, Denmark Rigshosp, Juliane Marie Ctr, DK-2100 Copenhagen, Denmark Univ Med Ctr, Dept Pediat Immunol, Utrecht, Netherlands Wilhelmina Childrens Hosp, Utrecht, Netherlands Great Ormond St Hosp Sick Children, Children NHS Fdn Trust, Renal Unit, London, England Lyon Univ, Hosp Civils Lyon, Rheumatol & Dermatol Dept, Lyon, France Med Univ Innsbruck, A-6020 Innsbruck, Austria Prim Univ Doz, Bregenz, Austria Hamburg Ctr Pediat & Adolescence Rheumatol, Hamburg, Germany Asklepios Clin Sankt, Augustin, Germany Univ Zurich, Childrens Hosp, Zurich, Switzerland Aristotle Univ Thessaloniki, Pediat Immunol & Rheumatol Referral Ctr, GR-54006 Thessaloniki, Greece Israel Meir Hosp, Kefar Sava, Israel Sanjay Gandhi Postgrad Inst Med Sci, Lucknow, Uttar Pradesh, India Semmelweis Univ, H-1085 Budapest, Hungary Anna Meyer Hosp, Florence, Italy Univ Siena, Res Ctr System Autoimmune & Autoinflammatory Dis, I-53100 Siena, Italy Univ Florence, Florence, Italy Osped Pediat Bambino Gesu, IRCCS, Pediat Rheumatol Unit, Rome, Italy Univ Genoa Pediat II Reumatol, Ist G Gaslini EULAR, Ctr Excellence Rheumatol, Genoa, Italy Univ Cattolica Sacro Cuore, Inst Pediat, Rome, Italy Univ Padua, Dept Pediat, Pediat Rheumatol Unit, Padua, Italy Yokohama City Univ, Sch Med, Yokohama, Kanagawa 232, Japan Univ Estadual Paulista, UNESP, Botucatu, SP, Brazil Univ Fed Sao Paulo, Dept Pediat, Sao Paulo, Brazil Univ Estadual Campinas, Dept Med, Campinas, SP, Brazil Univ Fed Rio de Janeiro, Dept Pediat, Rio De Janeiro, Brazil Univ Estado do, Adolescent Hlth Care Unit, Div Pediat Rheumatol, Rio De Janeiro, Brazil Univ Sao Paulo, Fac Med, Childrens Inst, Dept Pediat,Pediat Rheumatol Unit, Sao Paulo, Brazil Childrens Inst, Pediat Rheumatol Unit, Sao Paulo, Brazil Clin Pediat I, Cluj Napoca, Romania Inst Rheumatol, Belgrade, Serbia Univ Childrens Hosp, Univ Med Ctr Ljubljana, Ljubljana, Slovenia Head Rheumatol Hosp Pedro Elizalde, Buenos Aires, DF, Argentina Hosp Gen Mexico City, Mexico City, DF, Mexico Hosp Infantil Mexico Fed Gomez, Mexico City, DF, Mexico Hosp San Juan Dios, Barcelona, Spain Hosp Univ Valle Hebron, Barcelona, Spain Mt Sinai Med Ctr, New York, NY 10029 USA Mt Sinai Med Ctr, Miami Beach, FL 33140 USA Complejo Hosp Univ Ruiz & Paez, Bolivar, Venezuela Hacettepe Univ, Dept Pediat, Ankara, Turkey Istanbul Univ, Cerrahpasa Med Sch, Istanbul, Turkey FMF Arthrit Vasculitis & Orphan Dis Res Ctr, Inst Hlth Sci, Ankara, Turkey Univ Calgary, Dept Pediat, Alberta Childrens Hosp, Res Inst, Calgary, AB T2N 1N4, Canada Univ Estadual Paulista, UNESP, Botucatu, SP, Brazil

Published
2014

33. Loss-of-function mutations in TNFAIP3 leading to A20 haploinsufficiency cause an early-onset autoinflammatory disease

Author

Zhou, Qing, Wang, Hongying, Schwartz, Daniella M, Stoffels, Monique, Park, Yong Hwan, Zhang, Yuan, Yang, Dan, Demirkaya, Erkan, Takeuchi, Masaki, Tsai, Wanxia Li, Lyons, Jonathan J, Yu, Xiaomin, Ouyang, Claudia, Chen, Celeste, Chin, David T, Zaal, Kristien, Chandrasekharappa, Settara C, P Hanson, Eric, Yu, Zhen, Mullikin, James C, Hasni, Sarfaraz A, Wertz, Ingrid E, Ombrello, Amanda K, Stone, Deborah L, Hoffmann, Patrycja, Jones, Anne, Barham, Beverly K, Leavis, Helen L, van Royen, Annet, Sibley, Cailin, Batu, Ezgi D, Gül, Ahmet, Siegel, Richard M, Boehm, Manfred, Milner, Joshua D, Ozen, Seza, Gadina, Massimo, Chae, JaeJin, Laxer, Ronald M, Kastner, Daniel L, Aksentijevich, Ivona, Zhou, Qing, Wang, Hongying, Schwartz, Daniella M, Stoffels, Monique, Park, Yong Hwan, Zhang, Yuan, Yang, Dan, Demirkaya, Erkan, Takeuchi, Masaki, Tsai, Wanxia Li, Lyons, Jonathan J, Yu, Xiaomin, Ouyang, Claudia, Chen, Celeste, Chin, David T, Zaal, Kristien, Chandrasekharappa, Settara C, P Hanson, Eric, Yu, Zhen, Mullikin, James C, Hasni, Sarfaraz A, Wertz, Ingrid E, Ombrello, Amanda K, Stone, Deborah L, Hoffmann, Patrycja, Jones, Anne, Barham, Beverly K, Leavis, Helen L, van Royen, Annet, Sibley, Cailin, Batu, Ezgi D, Gül, Ahmet, Siegel, Richard M, Boehm, Manfred, Milner, Joshua D, Ozen, Seza, Gadina, Massimo, Chae, JaeJin, Laxer, Ronald M, Kastner, Daniel L, and Aksentijevich, Ivona

Published
2015

34. Elicitation of Expert Prior Opinion : Application to the MYPAN Trial in Childhood Polyarteritis Nodosa

Author

Hampson, Lisa V., Whitehead, John, Eleftheriou, Despina, Tudur-Smith, Catrin, Jones, Rachel, Jayne, David, Hickey, Helen, Beresford, Michael W., Bracaglia, Claudia, Caldas, Afonso, Cimaz, Rolando, Dehoorne, Joke, Dolezalova, Pavla, Friswell, Mark, Jelusic, Marija, Marks, Stephen D., Martin, Neil, McMahon, Anne-Marie, Peitz, Joachim, van Royen, Annet, Soylemezoglu, Oguz, Brogan, Paul A., Hampson, Lisa V., Whitehead, John, Eleftheriou, Despina, Tudur-Smith, Catrin, Jones, Rachel, Jayne, David, Hickey, Helen, Beresford, Michael W., Bracaglia, Claudia, Caldas, Afonso, Cimaz, Rolando, Dehoorne, Joke, Dolezalova, Pavla, Friswell, Mark, Jelusic, Marija, Marks, Stephen D., Martin, Neil, McMahon, Anne-Marie, Peitz, Joachim, van Royen, Annet, Soylemezoglu, Oguz, and Brogan, Paul A.

Published
2015

35. Elicitation of Expert Prior Opinion: Application to the MYPAN Trial in Childhood Polyarteritis Nodosa

Author

Child Health, Reumatologie patientenzorg, Hampson, Lisa V., Whitehead, John, Eleftheriou, Despina, Tudur-Smith, Catrin, Jones, Rachel, Jayne, David, Hickey, Helen, Beresford, Michael W., Bracaglia, Claudia, Caldas, Afonso, Cimaz, Rolando, Dehoorne, Joke, Dolezalova, Pavla, Friswell, Mark, Jelusic, Marija, Marks, Stephen D., Martin, Neil, McMahon, Anne-Marie, Peitz, Joachim, van Royen, Annet, Soylemezoglu, Oguz, Brogan, Paul A., Child Health, Reumatologie patientenzorg, Hampson, Lisa V., Whitehead, John, Eleftheriou, Despina, Tudur-Smith, Catrin, Jones, Rachel, Jayne, David, Hickey, Helen, Beresford, Michael W., Bracaglia, Claudia, Caldas, Afonso, Cimaz, Rolando, Dehoorne, Joke, Dolezalova, Pavla, Friswell, Mark, Jelusic, Marija, Marks, Stephen D., Martin, Neil, McMahon, Anne-Marie, Peitz, Joachim, van Royen, Annet, Soylemezoglu, Oguz, and Brogan, Paul A.

Published
2015

36. Loss-of-function mutations in TNFAIP3 leading to A20 haploinsufficiency cause an early-onset autoinflammatory disease

Author

MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Child Health, Reumatologie patientenzorg, Zhou, Qing, Wang, Hongying, Schwartz, Daniella M, Stoffels, Monique, Park, Yong Hwan, Zhang, Yuan, Yang, Dan, Demirkaya, Erkan, Takeuchi, Masaki, Tsai, Wanxia Li, Lyons, Jonathan J, Yu, Xiaomin, Ouyang, Claudia, Chen, Celeste, Chin, David T, Zaal, Kristien, Chandrasekharappa, Settara C, P Hanson, Eric, Yu, Zhen, Mullikin, James C, Hasni, Sarfaraz A, Wertz, Ingrid E, Ombrello, Amanda K, Stone, Deborah L, Hoffmann, Patrycja, Jones, Anne, Barham, Beverly K, Leavis, Helen L, van Royen, Annet, Sibley, Cailin, Batu, Ezgi D, Gül, Ahmet, Siegel, Richard M, Boehm, Manfred, Milner, Joshua D, Ozen, Seza, Gadina, Massimo, Chae, JaeJin, Laxer, Ronald M, Kastner, Daniel L, Aksentijevich, Ivona, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Child Health, Reumatologie patientenzorg, Zhou, Qing, Wang, Hongying, Schwartz, Daniella M, Stoffels, Monique, Park, Yong Hwan, Zhang, Yuan, Yang, Dan, Demirkaya, Erkan, Takeuchi, Masaki, Tsai, Wanxia Li, Lyons, Jonathan J, Yu, Xiaomin, Ouyang, Claudia, Chen, Celeste, Chin, David T, Zaal, Kristien, Chandrasekharappa, Settara C, P Hanson, Eric, Yu, Zhen, Mullikin, James C, Hasni, Sarfaraz A, Wertz, Ingrid E, Ombrello, Amanda K, Stone, Deborah L, Hoffmann, Patrycja, Jones, Anne, Barham, Beverly K, Leavis, Helen L, van Royen, Annet, Sibley, Cailin, Batu, Ezgi D, Gül, Ahmet, Siegel, Richard M, Boehm, Manfred, Milner, Joshua D, Ozen, Seza, Gadina, Massimo, Chae, JaeJin, Laxer, Ronald M, Kastner, Daniel L, and Aksentijevich, Ivona

Published
2015

37. SHARE – workpackage 5 : evidence based recommendations for diagnosis and treatment of childhood-onset systemic lupus erythematosus

Author

Groot, Noortje, primary, de Graeff, Nienke, additional, Avcin, Tadej, additional, Bader-Meunier, Brigitte, additional, Brogan, Paul, additional, Dolezalova, Pavla, additional, Feldman, Brian, additional, Kone-Paut, Isabelle, additional, Lahdenne, Pekka, additional, Martini, Alberto, additional, McCann, Liza, additional, Ozen, Seza, additional, Pilkington, Clarissa, additional, Ravelli, Angelo, additional, van Royen, Annet, additional, Vastert, Bas, additional, Wulffraat, Nico, additional, Kamphuis, Sylvia, additional, and Beresford, Michael, additional

Published
2014
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38. SHARE – workpackage 5: evidence-based recommendations for diagnosis and treatment of kawasaki disease and henoch schönlein purpura

Author

de Graeff, Nienke, primary, Groot, Noortje, additional, Kamphuis, Sylvia, additional, Avcin, Tadej, additional, Bader-Meunier, Brigitte, additional, Dolezalova, Pavla, additional, Feldman, Brian, additional, Kone-Paut, Isabelle, additional, Lahdenne, Pekka, additional, Martini, Alberto, additional, McCann, Liza, additional, Pilkington, Clarissa, additional, Ravelli, Angelo, additional, van Royen, Annet, additional, Wulffraat, Nico, additional, Ozen, Seza, additional, Brogan, Paul, additional, and Beresford, Michael, additional

Published
2014
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39. SHARE – workpackage 5: development of best practices of diagnosis and treatment for paediatric rheumatic diseases throughout Europe

Author

Vastert, Sebastiaan, primary, Dolezalova, Pavla, additional, Feldman, Brian, additional, Ravelli, Angelo, additional, Wulffraat, Nico, additional, Martini, Alberto, additional, Foster, Helene, additional, Enders, Felicitas Belluti, additional, van Royen, Annet, additional, McCann, Liza, additional, Groot, Noortje, additional, Kamphuis, Sylvia, additional, Avcin, Tadej, additional, Beresford, Michael, additional, Culpo, Roberta, additional, Foeldvari, Ivan, additional, and Zulian, Francesco, additional

Published
2014
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40. SHARE – workpackage 5: evidence based recommendations for diagnosis and treatment of the antiphospholipid syndrome

Author

Groot, Noortje, primary, de Graeff, Nienke, additional, Avcin, Tadej, additional, Bader-Meunier, Brigitte, additional, Brogan, Paul, additional, Dolezalova, Pavla, additional, Feldman, Brian, additional, Kone-Paut, Isabelle, additional, Lahdenne, Pekka, additional, Martini, Alberto, additional, McCann, Liza, additional, Ozen, Seza, additional, Pilkington, Clarissa, additional, Ravelli, Angelo, additional, van Royen, Annet, additional, Vastert, Bas, additional, Wulffraat, Nico, additional, Kamphuis, Sylvia, additional, and Beresford, Michael, additional

Published
2014
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46. Health related quality of life measure in systemic pediatric rheumatic diseases and its translation to different languages: an international collaboration.

Author

Moorthy, Lakshmi Nandini, Roy, Elizabeth, Kurra, Vamsi, Herlin, Troels, Nielsen, Susan, Wulffraat, Nico, van Royen, Annet, Marks, Stephen D., Belot, Alexandre, Brunner, Jurgen, Huemer, Christian, Foeldvari, Ivan, Horneff, Gerd, Peterson, Margaret G. E., Lehman, Thomas J. A., Saurenman, Traudel, Schroeder, Silke, Pratsidou-Gertsi, Polyxeni, Trachana, Maria, and Uziel, Yosef

Subjects
RHEUMATISM in children, CHILDREN'S health, SYSTEMIC lupus erythematosus, MIXED connective tissue disease, SYSTEMIC scleroderma
Abstract

Background Rheumatic diseases in children are associated with significant morbidity and poor healthrelated quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases. Findings We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY©) to Simple Measure of Impact of Illness in Youngsters (SMILY©-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY©-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n=15) and 17 parents participated. The mean age was 12±4 years, with median disease duration of 21 months (1-172 months). We translated SMILY©- Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa. Conclusion SMILY©-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY©-Illness with its available translations may be used as useful adjuncts to clinical practice and research. [ABSTRACT FROM AUTHOR]

Published
2014
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49. Consensus-based recommendations for the management of juvenile systemic sclerosis.

Author

Foeldvari I, Culpo R, Sperotto F, Anton J, Avcin T, Baildam E, Boros C, Chaitow J, Constantin T, Kasapcopur O, Knupp Feitosa de Oliveira S, Pilkington C, Toplak N, van Royen A, Saad Magalhaes C, Vastert SJ, Wulffraat N, and Zulian F

Subjects
Child, Consensus, Evidence-Based Medicine, Humans, Scleroderma, Localized diagnosis, Scleroderma, Systemic diagnosis, Severity of Illness Index, Scleroderma, Localized drug therapy, Scleroderma, Systemic drug therapy
Abstract

Juvenile systemic sclerosis (JSSc) is a rare disease of childhood and currently no international consensus exists with regard to its assessment and treatment. This SHARE (Single Hub and Access point for paediatric Rheumatology in Europe) initiative, based on expert opinion informed by the best available evidence, provides recommendations for the assessment and treatment of patients with JSSc with a view to improving their outcome. Experts focused attention not only on the skin assessment but also on the early signs of internal organ involvement whose proper treatment can significantly affect the long-term outcome. A score for disease severity is proposed in order to perform a structured assessment of outcome over time but a validation in a wider patient population is recommended. Finally, a stepwise treatment approach is proposed in order to unify the standard of care throughout Europe with the aim to reduce morbidity and mortality in this disease., (© The Author(s) 2020. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Published
2021
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50. European consensus-based recommendations for the diagnosis and treatment of rare paediatric vasculitides - the SHARE initiative.

Author

de Graeff N, Groot N, Brogan P, Ozen S, Avcin T, Bader-Meunier B, Dolezalova P, Feldman BM, Kone-Paut I, Lahdenne P, Marks SD, McCann L, Pilkington C, Ravelli A, van Royen A, Uziel Y, Vastert B, Wulffraat N, Kamphuis S, and Beresford MW

Subjects
Child, Consensus, Europe, Female, Humans, Male, Evidence-Based Medicine standards, Pediatrics standards, Practice Guidelines as Topic standards, Rheumatology standards, Systemic Vasculitis
Abstract

Objectives: The European initiative Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) aimed to optimize care for children with rheumatic diseases. Systemic vasculitides are very rare in children. Consequently, despite recent advances, paediatric-specific information is sparse. The lack of evidence-based recommendations is an important, unmet need. This study aimed to provide recommendations for diagnosing and treating children with rare forms of childhood systemic vasculitis., Methods: Recommendations were developed by a consensus process in accordance with the European League Against Rheumatism standard operating procedures. A systematic literature review informed the recommendations, which were devised and evaluated by a panel of experts via an online survey, and two consensus meetings using nominal group technique. Recommendations were accepted when ⩾ 80% of experts agreed., Results: Ninety-three relevant articles were found, and 78 recommendations were accepted in the two consensus meetings. General, cross-cutting recommendations and disease-specific statements regarding the diagnosis and treatment of childhood-onset PAN, granulomatosis with polyangiitis, microscopic polyangiitis, eosinophilic granulomatosis with polyangiitis, and Takayasu arteritis are provided., Conclusion: These Single Hub and Access point for paediatric Rheumatology in Europe recommendations were formulated through an evidence-based consensus process to support uniform, high-quality standard of care for children with rare forms of paediatric systemic vasculitis., (© The Author(s) 2018. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Published
2019
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