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1. The European network for care of children with paediatric rheumatic diseases : Care across borders

Author

Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, Boyko, Yaryna, Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, and Boyko, Yaryna

Published
2019

2. The European network for care of children with paediatric rheumatic diseases : Care across borders

Author

Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, Boyko, Yaryna, Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, and Boyko, Yaryna

Published
2019

3. The European network for care of children with paediatric rheumatic diseases : Care across borders

Author

Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, Boyko, Yaryna, Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, and Boyko, Yaryna

Published
2019

4. The European network for care of children with paediatric rheumatic diseases: Care across borders

Author

UMC Utrecht, Immuno/reuma onderzoek 1 (Vastert), Immuno/reuma onderzoek 5 (Vastert2), CTI Van Loosdregt, Child Health, Infection & Immunity, Immunologie/Reumatologie, Cluster B, Onderzoek, Regenerative Medicine and Stem Cells, Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, Boyko, Yaryna, UMC Utrecht, Immuno/reuma onderzoek 1 (Vastert), Immuno/reuma onderzoek 5 (Vastert2), CTI Van Loosdregt, Child Health, Infection & Immunity, Immunologie/Reumatologie, Cluster B, Onderzoek, Regenerative Medicine and Stem Cells, Dolezalova, Pavla, Anton, Jordi, Avcin, Tadej, Beresford, Michael W., Brogan, Paul A., Constantin, Tamas, Egert, Yona, Foeldvari, Ivan, Foster, Helen E., Hentgen, Veronique, Kone-Paut, Isabelle, Kuemmerle-Deschner, Jasmine B., Lahdenne, Pekka, Magnusson, Bo, Martini, Alberto, McCann, Liza, Minden, Kirsten, Ozen, Seza, Schoemaker, Casper, Quartier, Pierre, Ravelli, Angelo, Rumba-Rozenfelde, Ingrida, Ruperto, Nicola, Vastert, Sebastian, Wouters, Carine, Zulian, Francesco, Wulffraat, Nico M., Huemer, Christian, Joos, Rik, Mihaylova, Dimitrina, Harjacek, Miroslav, Mina, Elpida, Nielsen, Susan, Foell, Dirk, Vougiouka, Olga, Orbán, Ilona, Uziel, Yosef, Ruperto, Nicolino, Flato, Berit, Smolewska, Elzbieta, Melo-Gomes, Jose Antonio, Lazar, Calin, Susic, Gordana, Dallos, Tomas, De Inocencio, Jaime, Berntson, Lillemor, Hofer, Michael, and Boyko, Yaryna

Published
2019

5. Pharmacovigilance in juvenile idiopathic arthritis patients treated with biologic or synthetic drugs: combined data of more than 15,000 patients from Pharmachild and national registries

Author

Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Stanevica, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Stanevica, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, and Ruperto, Nicolino

Abstract

BackgroundThe availability of methotrexate and the introduction of multiple biological agents have revolutionized the treatment of juvenile idiopathic arthritis (JIA). Several international and national drug registries have been implemented to accurately monitor the long-term safety/efficacy of these agents. This report aims to present the combined data coming from Pharmachild/PRINTO registry and the national registries from Germany (BiKeR) and Sweden.MethodsDescriptive statistics was used for demographic, clinical data, drug exposure, adverse events (AEs) and events of special interest (ESIs). For the Swedish register, AE data were not available.ResultsData from a total of 15,284 patients were reported: 8274 (54%) from the Pharmachild registry and 3990 (26%) and 3020 (20%) from the German and the Swedish registries, respectively. Pharmachild children showed a younger age (median of 5.4versus 7.6 years) at JIA onset and shorter disease duration at last available visit (5.3 versus 6.1-6.8) when compared with the other registries. The most frequent JIA category was the rheumatoid factor-negative polyarthritis (range of 24.6-29.9%). Methotrexate (61-84%) and etanercept (24%-61.8%) were the most frequently used synthetic and biologic disease-modifying anti-rheumatic drugs (DMARDs), respectively. There was a wide variability in glucocorticoid use (16.7-42.1%). Serious AEs were present in 572 (6.9%) patients in Pharmachild versus 297 (7.4%) in BiKeR. Infection and infestations were the most frequent AEs (29.4-30.1%) followed by gastrointestinal disorders (11.5-19.6%). The most frequent ESIs were infections (75.3-89%).ConclusionsThis article is the first attempt to present a very large sample of data on JIA patients from different national and international registries and represents the first proposal for data merging as the most powerful tool for future analysis of safety and effectiveness of immunosuppressive therapies in JIA.Registry registrationThe Pharmachild registry

Published
2018

6. Pharmacovigilance in juvenile idiopathic arthritis patients treated with biologic or synthetic drugs : Combined data of more than 15,000 patients from Pharmachild and national registries

Author

Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Staņěviča, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Staņěviča, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, and Ruperto, Nicolino

Published
2018

7. Pharmacovigilance in juvenile idiopathic arthritis patients treated with biologic or synthetic drugs : Combined data of more than 15,000 patients from Pharmachild and national registries

Author

Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Staņěviča, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Staņěviča, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, and Ruperto, Nicolino

Published
2018

8. Pharmacovigilance in juvenile idiopathic arthritis patients treated with biologic or synthetic drugs: Combined data of more than 15,000 patients from Pharmachild and national registries

Author

Immuno/reuma patientenzorg, Child Health, Immunologie/Reumatologie, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Onderzoek, Regenerative Medicine and Stem Cells, Infection & Immunity, Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Staņěviča, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Immuno/reuma patientenzorg, Child Health, Immunologie/Reumatologie, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Onderzoek, Regenerative Medicine and Stem Cells, Infection & Immunity, Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Staņěviča, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, and Ruperto, Nicolino

Published
2018

9. Pharmacovigilance in juvenile idiopathic arthritis patients treated with biologic or synthetic drugs: combined data of more than 15,000 patients from Pharmachild and national registries

Author

Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Stanevica, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Swart, Joost, Giancane, Gabriella, Horneff, Gerd, Magnusson, Bo, Hofer, Michael, Alexeeva, Ekaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Stanevica, Valda, Tracahana, Maria, Ailioaie, Laura Marinela, Tsitsami, Elena, Klein, Ariane, Minden, Kirsten, Foeldvari, Ivan, Haas, Johannes Peter, Klotsche, Jens, Horne, Anna Carin, Consolaro, Alessandro, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, and Ruperto, Nicolino

Abstract

BackgroundThe availability of methotrexate and the introduction of multiple biological agents have revolutionized the treatment of juvenile idiopathic arthritis (JIA). Several international and national drug registries have been implemented to accurately monitor the long-term safety/efficacy of these agents. This report aims to present the combined data coming from Pharmachild/PRINTO registry and the national registries from Germany (BiKeR) and Sweden.MethodsDescriptive statistics was used for demographic, clinical data, drug exposure, adverse events (AEs) and events of special interest (ESIs). For the Swedish register, AE data were not available.ResultsData from a total of 15,284 patients were reported: 8274 (54%) from the Pharmachild registry and 3990 (26%) and 3020 (20%) from the German and the Swedish registries, respectively. Pharmachild children showed a younger age (median of 5.4versus 7.6 years) at JIA onset and shorter disease duration at last available visit (5.3 versus 6.1-6.8) when compared with the other registries. The most frequent JIA category was the rheumatoid factor-negative polyarthritis (range of 24.6-29.9%). Methotrexate (61-84%) and etanercept (24%-61.8%) were the most frequently used synthetic and biologic disease-modifying anti-rheumatic drugs (DMARDs), respectively. There was a wide variability in glucocorticoid use (16.7-42.1%). Serious AEs were present in 572 (6.9%) patients in Pharmachild versus 297 (7.4%) in BiKeR. Infection and infestations were the most frequent AEs (29.4-30.1%) followed by gastrointestinal disorders (11.5-19.6%). The most frequent ESIs were infections (75.3-89%).ConclusionsThis article is the first attempt to present a very large sample of data on JIA patients from different national and international registries and represents the first proposal for data merging as the most powerful tool for future analysis of safety and effectiveness of immunosuppressive therapies in JIA.Registry registrationThe Pharmachild registry

Published
2018

10. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities

Author

Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Abstract

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Published
2017
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11. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities

Author

Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Abstract

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Published
2017
Full Text
View/download PDF

12. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities

Author

Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Abstract

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Published
2017
Full Text
View/download PDF

13. 2016 American College of Rheumatology/European League Against Rheumatism Criteria for Minimal, Moderate, and Major Clinical Response in Juvenile Dermatomyositis : An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation Collaborative Initiative

Author

Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, Hansen, Paul, van der Net, Janjaap, for the International Myositis Assessment and Clinical Studies Group and the Paediatric Rheumatology International Trials Organisation, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, Hansen, Paul, van der Net, Janjaap, and for the International Myositis Assessment and Clinical Studies Group and the Paediatric Rheumatology International Trials Organisation

Published
2017

14. 2016 American College of Rheumatology/European League Against Rheumatism criteria for minimal, moderate, and major clinical response in juvenile dermatomyositis : An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation collaborative initiative

Author

Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, Van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, International Myositis Assessment and Clinical Studies Group, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, Van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, and International Myositis Assessment and Clinical Studies Group

Published
2017

15. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities

Author

Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A, Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E, Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E, Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A, Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E, Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E, Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Published
2017

16. Consensus-based recommendations for the management of juvenile dermatomyositis

Author

Bellutti Enders, Felicitas, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavla, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., van Royen-Kerkhof, Annet, Bellutti Enders, Felicitas, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavla, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., and van Royen-Kerkhof, Annet

Published
2017

17. Consensus-based recommendations for the management of juvenile dermatomyositis

Author

University of Helsinki, Hospital for Children and Adolescents, Enders, Felicitas Bellutti, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavia, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., van Royen-Kerkhof, Annet, University of Helsinki, Hospital for Children and Adolescents, Enders, Felicitas Bellutti, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavia, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., and van Royen-Kerkhof, Annet

Abstract

Background In 2012, a European initiative called Single Hub and Access point for pediatric Rheumatology in Europe (SHARE) was launched to optimise and disseminate diagnostic and management regimens in Europe for children and young adults with rheumatic diseases. Juvenile dermatomyositis (JDM) is a rare disease within the group of paediatric rheumatic diseases (PRDs) and can lead to significant morbidity. Evidence-based guidelines are sparse and management is mostly based on physicians' experience. Consequently, treatment regimens differ throughout Europe. Objectives To provide recommendations for diagnosis and treatment of JDM. Methods Recommendations were developed by an evidence-informed consensus process using the European League Against Rheumatism standard operating procedures. A committee was constituted, consisting of 19 experienced paediatric rheumatologists and 2 experts in paediatric exercise physiology and physical therapy, mainly from Europe. Recommendations derived from a validated systematic literature review were evaluated by an online survey and subsequently discussed at two consensus meetings using nominal group technique. Recommendations were accepted if > 80% agreement was reached. Results In total, 7 overarching principles, 33 recommendations on diagnosis and 19 recommendations on therapy were accepted with > 80% agreement among experts. Topics covered include assessment of skin, muscle and major organ involvement and suggested treatment pathways. Conclusions The SHARE initiative aims to identify best practices for treatment of patients suffering from PRD. Within this remit, recommendations for the diagnosis and treatment of JDM have been formulated by an evidenceinformed consensus process to produce a standard of care for patients with JDM throughout Europe.

Published
2017

18. 2016 American College of Rheumatology/European League Against Rheumatism criteria for minimal, moderate, and major clinical response in juvenile dermatomyositis : An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation collaborative initiative

Author

Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, Van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, International Myositis Assessment and Clinical Studies Group, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, Van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, and International Myositis Assessment and Clinical Studies Group

Published
2017

19. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities

Author

Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A, Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E, Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E, Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A, Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E, Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E, Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Published
2017

20. Consensus-based recommendations for the management of juvenile dermatomyositis

Author

Bellutti Enders, Felicitas, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavla, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., van Royen-Kerkhof, Annet, Bellutti Enders, Felicitas, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavla, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., and van Royen-Kerkhof, Annet

Published
2017

21. Consensus-based recommendations for the management of juvenile dermatomyositis

Author

Bellutti Enders, Felicitas, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavla, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., van Royen-Kerkhof, Annet, Bellutti Enders, Felicitas, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavla, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., and van Royen-Kerkhof, Annet

Published
2017

22. 2016 American College of Rheumatology/European League Against Rheumatism criteria for minimal, moderate, and major clinical response in juvenile dermatomyositis : An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation collaborative initiative

Author

Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, Van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, International Myositis Assessment and Clinical Studies Group, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, Van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, and International Myositis Assessment and Clinical Studies Group

Published
2017

23. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities

Author

Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A, Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E, Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E, Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A, Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E, Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E, Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Published
2017

24. 2016 American College of Rheumatology/European League Against Rheumatism Criteria for Minimal, Moderate, and Major Clinical Response in Juvenile Dermatomyositis : An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation Collaborative Initiative

Author

Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, Hansen, Paul, van der Net, Janjaap, for the International Myositis Assessment and Clinical Studies Group and the Paediatric Rheumatology International Trials Organisation, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, Hansen, Paul, van der Net, Janjaap, and for the International Myositis Assessment and Clinical Studies Group and the Paediatric Rheumatology International Trials Organisation

Published
2017

25. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities

Author

Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Abstract

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Published
2017
Full Text
View/download PDF

26. 2016 American College of Rheumatology/European League Against Rheumatism criteria for minimal, moderate, and major clinical response in juvenile dermatomyositis: An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation collaborative initiative

Author

Reumatologie patientenzorg, Cluster B, Infection & Immunity, Child Health, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, Van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, International Myositis Assessment and Clinical Studies Group, Reumatologie patientenzorg, Cluster B, Infection & Immunity, Child Health, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, Van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, and International Myositis Assessment and Clinical Studies Group

Published
2017

27. 2016 American College of Rheumatology/European League Against Rheumatism Criteria for Minimal, Moderate, and Major Clinical Response in Juvenile Dermatomyositis: An International Myositis Assessment and Clinical Studies Group/Paediatric Rheumatology International Trials Organisation Collaborative Initiative

Author

Reumatologie patientenzorg, Cluster B, Infection & Immunity, Child Health, Cluster Ontwikkelingsgerichte zorg, Kinderbewegingszorg patientenzorg, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, Hansen, Paul, van der Net, Janjaap, for the International Myositis Assessment and Clinical Studies Group and the Paediatric Rheumatology International Trials Organisation, Reumatologie patientenzorg, Cluster B, Infection & Immunity, Child Health, Cluster Ontwikkelingsgerichte zorg, Kinderbewegingszorg patientenzorg, Rider, Lisa G., Aggarwal, Rohit, Pistorio, Angela, Bayat, Nastaran, Erman, Brian, Feldman, Brian M., Huber, Adam M., Cimaz, Rolando, Cuttica, Rubén J., De Oliveira, Sheila Knupp, Lindsley, Carol B., Pilkington, Clarissa A., Punaro, Marilynn, Ravelli, Angelo, Reed, Ann M., Rouster-Stevens, Kelly, van Royen-Kerkhof, Annet, Dressler, Frank, Magalhaes, Claudia Saad, Constantin, Tamás, Davidson, Joyce E., Magnusson, Bo, Russo, Ricardo, Villa, Luca, Rinaldi, Mariangela, Rockette, Howard, Lachenbruch, Peter A., Miller, Frederick W., Vencovsky, Jiri, Ruperto, Nicolino, Hansen, Paul, van der Net, Janjaap, and for the International Myositis Assessment and Clinical Studies Group and the Paediatric Rheumatology International Trials Organisation

Published
2017

28. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis: challenges and opportunities

Author

Cluster B, Infection & Immunity, Regenerative Medicine and Stem Cells, Child Health, Divisieleiding O&O, BOO, Immunologie/Reumatologie, Infectiezieken, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A, Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E, Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E, Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Cluster B, Infection & Immunity, Regenerative Medicine and Stem Cells, Child Health, Divisieleiding O&O, BOO, Immunologie/Reumatologie, Infectiezieken, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A, Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E, Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E, Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Published
2017

29. Consensus-based recommendations for the management of juvenile dermatomyositis

Author

CTI Vastert, Kinderbewegingszorg patientenzorg, Child Health, Cluster Ontwikkelingsgerichte zorg, Reumatologie patientenzorg, Infection & Immunity, Cluster B, Regenerative Medicine and Stem Cells, Reumatologie, Bellutti Enders, Felicitas, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavla, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., van Royen-Kerkhof, Annet, CTI Vastert, Kinderbewegingszorg patientenzorg, Child Health, Cluster Ontwikkelingsgerichte zorg, Reumatologie patientenzorg, Infection & Immunity, Cluster B, Regenerative Medicine and Stem Cells, Reumatologie, Bellutti Enders, Felicitas, Bader-Meunier, Brigitte, Baildam, Eileen, Constantin, Tamas, Dolezalova, Pavla, Feldman, Brian M., Lahdenne, Pekka, Magnusson, Bo, Nistala, Kiran, Ozen, Seza, Pilkington, Clarissa, Ravelli, Angelo, Russo, Ricardo, Uziel, Yosef, van Brussel, Marco, van der Net, Janjaap, Vastert, Sebastiaan, Wedderburn, Lucy R., Wulffraat, Nicolaas, McCann, Liza J., and van Royen-Kerkhof, Annet

Published
2017

30. A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities

Author

Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, Hyrich, Kimme, Beukelman, Timothy, Anink, Janneke, Berntson, Lillemor, Duffy, Ciaran, Ellis, Justine A., Glerup, Mia, Guzman, Jaime, Horneff, Gerd, Kearsley-Fleet, Lianne, Klein, Ariane, Klotsche, Jens, Magnusson, Bo, Minden, Kirsten, Munro, Jane E., Niewerth, Martina, Nordal, Ellen, Ruperto, Nicolino, Santos, Maria Jose, Schanberg, Laura E., Thomson, Wendy, van Suijlekom-Smit, Lisette, Wulffraat, Nico, and Hyrich, Kimme

Abstract

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Published
2017
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31. Prednisone versus prednisone plus ciclosporin versus prednisone plus methotrexate in new-onset juvenile dermatomyositis : a randomised trial

Author

Ruperto, Nicolino, Pistorio, Angela, Oliveira, Sheila, Zulian, Francesco, Cuttica, Ruben, Ravelli, Angelo, Fischbach, Michel, Magnusson, Bo, Sterba, Gary, Avcin, Tadej, Brochard, Karine, Corona, Fabrizia, Dressler, Frank, Gerloni, Valeria, Apaz, Maria T, Bracaglia, Claudia, Cespedes-Cruz, Adriana, Cimaz, Rolando, Couillault, Gerard, Joos, Rik, Quartier, Pierre, Russo, Ricardo, Tardieu, Marc, Wulffraat, Nico, Bica, Blanca, Dolezalova, Pavla, Ferriani, Virginia, Flato, Berit, Bernard-Medina, Ana G, Herlin, Troels, Trachana, Maria, Meini, Antonella, Allain-Launay, Emma, Pilkington, Clarissa, Vargova, Veronika, Wouters, Carine, Angioloni, Simona, Martini, Alberto, Paediatric Rheumatology International Trials Organisation (PRINTO), Ruperto, Nicolino, Pistorio, Angela, Oliveira, Sheila, Zulian, Francesco, Cuttica, Ruben, Ravelli, Angelo, Fischbach, Michel, Magnusson, Bo, Sterba, Gary, Avcin, Tadej, Brochard, Karine, Corona, Fabrizia, Dressler, Frank, Gerloni, Valeria, Apaz, Maria T, Bracaglia, Claudia, Cespedes-Cruz, Adriana, Cimaz, Rolando, Couillault, Gerard, Joos, Rik, Quartier, Pierre, Russo, Ricardo, Tardieu, Marc, Wulffraat, Nico, Bica, Blanca, Dolezalova, Pavla, Ferriani, Virginia, Flato, Berit, Bernard-Medina, Ana G, Herlin, Troels, Trachana, Maria, Meini, Antonella, Allain-Launay, Emma, Pilkington, Clarissa, Vargova, Veronika, Wouters, Carine, Angioloni, Simona, Martini, Alberto, and Paediatric Rheumatology International Trials Organisation (PRINTO)

Published
2016

32. Prednisone versus prednisone plus ciclosporin versus prednisone plus methotrexate in new-onset juvenile dermatomyositis : a randomised trial

Author

Ruperto, Nicolino, Pistorio, Angela, Oliveira, Sheila, Zulian, Francesco, Cuttica, Ruben, Ravelli, Angelo, Fischbach, Michel, Magnusson, Bo, Sterba, Gary, Avcin, Tadej, Brochard, Karine, Corona, Fabrizia, Dressler, Frank, Gerloni, Valeria, Apaz, Maria T, Bracaglia, Claudia, Cespedes-Cruz, Adriana, Cimaz, Rolando, Couillault, Gerard, Joos, Rik, Quartier, Pierre, Russo, Ricardo, Tardieu, Marc, Wulffraat, Nico, Bica, Blanca, Dolezalova, Pavla, Ferriani, Virginia, Flato, Berit, Bernard-Medina, Ana G, Herlin, Troels, Trachana, Maria, Meini, Antonella, Allain-Launay, Emma, Pilkington, Clarissa, Vargova, Veronika, Wouters, Carine, Angioloni, Simona, Martini, Alberto, Paediatric Rheumatology International Trials Organisation (PRINTO), Ruperto, Nicolino, Pistorio, Angela, Oliveira, Sheila, Zulian, Francesco, Cuttica, Ruben, Ravelli, Angelo, Fischbach, Michel, Magnusson, Bo, Sterba, Gary, Avcin, Tadej, Brochard, Karine, Corona, Fabrizia, Dressler, Frank, Gerloni, Valeria, Apaz, Maria T, Bracaglia, Claudia, Cespedes-Cruz, Adriana, Cimaz, Rolando, Couillault, Gerard, Joos, Rik, Quartier, Pierre, Russo, Ricardo, Tardieu, Marc, Wulffraat, Nico, Bica, Blanca, Dolezalova, Pavla, Ferriani, Virginia, Flato, Berit, Bernard-Medina, Ana G, Herlin, Troels, Trachana, Maria, Meini, Antonella, Allain-Launay, Emma, Pilkington, Clarissa, Vargova, Veronika, Wouters, Carine, Angioloni, Simona, Martini, Alberto, and Paediatric Rheumatology International Trials Organisation (PRINTO)

Published
2016

33. Prednisone versus prednisone plus ciclosporin versus prednisone plus methotrexate in new-onset juvenile dermatomyositis: a randomised trial

Author

Infection & Immunity, Regenerative Medicine and Stem Cells, Child Health, Immuno/reuma patientenzorg, Ruperto, Nicolino, Pistorio, Angela, Oliveira, Sheila, Zulian, Francesco, Cuttica, Ruben, Ravelli, Angelo, Fischbach, Michel, Magnusson, Bo, Sterba, Gary, Avcin, Tadej, Brochard, Karine, Corona, Fabrizia, Dressler, Frank, Gerloni, Valeria, Apaz, Maria T, Bracaglia, Claudia, Cespedes-Cruz, Adriana, Cimaz, Rolando, Couillault, Gerard, Joos, Rik, Quartier, Pierre, Russo, Ricardo, Tardieu, Marc, Wulffraat, Nico, Bica, Blanca, Dolezalova, Pavla, Ferriani, Virginia, Flato, Berit, Bernard-Medina, Ana G, Herlin, Troels, Trachana, Maria, Meini, Antonella, Allain-Launay, Emma, Pilkington, Clarissa, Vargova, Veronika, Wouters, Carine, Angioloni, Simona, Martini, Alberto, Paediatric Rheumatology International Trials Organisation (PRINTO), Infection & Immunity, Regenerative Medicine and Stem Cells, Child Health, Immuno/reuma patientenzorg, Ruperto, Nicolino, Pistorio, Angela, Oliveira, Sheila, Zulian, Francesco, Cuttica, Ruben, Ravelli, Angelo, Fischbach, Michel, Magnusson, Bo, Sterba, Gary, Avcin, Tadej, Brochard, Karine, Corona, Fabrizia, Dressler, Frank, Gerloni, Valeria, Apaz, Maria T, Bracaglia, Claudia, Cespedes-Cruz, Adriana, Cimaz, Rolando, Couillault, Gerard, Joos, Rik, Quartier, Pierre, Russo, Ricardo, Tardieu, Marc, Wulffraat, Nico, Bica, Blanca, Dolezalova, Pavla, Ferriani, Virginia, Flato, Berit, Bernard-Medina, Ana G, Herlin, Troels, Trachana, Maria, Meini, Antonella, Allain-Launay, Emma, Pilkington, Clarissa, Vargova, Veronika, Wouters, Carine, Angioloni, Simona, Martini, Alberto, and Paediatric Rheumatology International Trials Organisation (PRINTO)

Published
2016

34. Perceived Oral Health and Care of Children with Juvenile Idiopathic Arthritis : A Qualitative Study

Author

Leksell, Eva, Hallberg, Ulrika, Magnusson, Bo, Ernberg, Malin, Hedenberg-Magnusson, Britt, Leksell, Eva, Hallberg, Ulrika, Magnusson, Bo, Ernberg, Malin, and Hedenberg-Magnusson, Britt

Abstract

Aims: To increase knowledge about how children diagnosed with juvenile idiopathic arthritis (JIA) perceive their oral health and dental care. Methods: Fifteen interviews with children diagnosed with JIA, aged 6 to 16 years, were analyzed according to classical grounded theory. Results: The children's main concern about their oral health was identified as creating a positive identity after being diagnosed with JIA and learning to live with oral health problems. While attempting to cope with this concern, the children often endured in silence, the core category in the analysis. A variety of aspects were found of this core coping strategy, which were categorized as differentiating from the disease, working on personal caretaking and positive attitude, fighting fears and sadness, control of professional aid, and building supportive relationships. The results emphasize the importance for caregivers to show empathy and interest in the child as a person, to ask precise questions when taking case histories so the child does not remain silent, to provide psychosocial support and suggest positive coping strategies, to describe and administer treatments, and to give hope for the future. Conclusion: Awareness of the social interaction between a child diagnosed with JIA and health professionals as well as awareness of how to approach a child with longstanding illness are crucial for disclosing and treating the child's orofacial symptoms.

Published
2015
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35. Unraveling the logics of landscape

Author

Stenseke, Marie, Dymitrow, Mirek, Saltzman, Katarina, Almered Olsson, Gunilla, Magnusson, Bo, Gustavsson, Eva, Lagerqvist, Bosse, Nyström, Lars, Sjölander Lindqvist, Annelie, Westin, Jonathan, Stenseke, Marie, Dymitrow, Mirek, Saltzman, Katarina, Almered Olsson, Gunilla, Magnusson, Bo, Gustavsson, Eva, Lagerqvist, Bosse, Nyström, Lars, Sjölander Lindqvist, Annelie, and Westin, Jonathan

Abstract

Despite conceptual oscillations through times, the concept of landscape remains highly subjective, whereupon unraveling its 'logics' opens up to a plurality of interpretations. Accordingly, by focusing on the interconnections present in the non-haphazard production of landscape, this publication elaborates on how the rural landscape is valued, monitored, changed, harbored, used and misused, be it through actions, representations or metaphors. This book covers a broad range of topics, with contributions from scholars from more than 30 countries.

Published
2014

37. Two randomized trials of canakinumab in systemic juvenile idiopathic arthritis

Author

Ruperto, Nicolino, Viola, Stefania, Martini, Alberto, Cimaz, Rolando, Brunner, Hermine H.I., Grom, Alexei, Lovell, Daniel D.J., Quartier, Pierre, Kone-Paut, Isabelle, Constantin, Tamás, Wulffraat, Nico, Horneff, Gerd, Kallinich, Tilmann, Brik, Riva, Berkun, Yackov, Uziel, Yosef, McCann, Liza, Nistala, Kiran, Kasapcopur, Ozgur, Erguven, Muferet, Ozen, Seza, Rutkowska-Sak, Lidia, Schneider, Rayfel, Calvo, Inmaculada, Gamir, Maria Luz, Goffin, Laurence, Wouters, Carine, Hofer, Michael, Lheritier, Karine, Oliveira, Sheila Knupp Feitosa De S.K., Sztajnbok, Flavio, Ferrandiz, Manuel M.A., Flato, Berit, Magnusson, Bo, Abrams, Ken, Kim, Dennis, Ruperto, Nicolino, Viola, Stefania, Martini, Alberto, Cimaz, Rolando, Brunner, Hermine H.I., Grom, Alexei, Lovell, Daniel D.J., Quartier, Pierre, Kone-Paut, Isabelle, Constantin, Tamás, Wulffraat, Nico, Horneff, Gerd, Kallinich, Tilmann, Brik, Riva, Berkun, Yackov, Uziel, Yosef, McCann, Liza, Nistala, Kiran, Kasapcopur, Ozgur, Erguven, Muferet, Ozen, Seza, Rutkowska-Sak, Lidia, Schneider, Rayfel, Calvo, Inmaculada, Gamir, Maria Luz, Goffin, Laurence, Wouters, Carine, Hofer, Michael, Lheritier, Karine, Oliveira, Sheila Knupp Feitosa De S.K., Sztajnbok, Flavio, Ferrandiz, Manuel M.A., Flato, Berit, Magnusson, Bo, Abrams, Ken, and Kim, Dennis

Abstract

BACKGROUND: Interleukin-1 is pivotal in the pathogenesis of systemic juvenile idiopathic arthritis (JIA). We assessed the efficacy and safety of canakinumab, a selective, fully human, anti-interleukin-1β monoclonal antibody, in two trials. METHODS:In trial 1, we randomly assigned patients, 2 to 19 years of age, with systemic JIA and active systemic features (fever; ≥2 active joints; C-reactive protein, >30 mg per liter; and glucocorticoid dose, ≤1.0 mg per kilogram of body weight per day), in a double-blind fashion, to a single subcutaneous dose of canakinumab (4 mg per kilogram) or placebo. The primary outcome, termed adapted JIA ACR 30 response, was defined as improvement of 30% or more in at least three of the six core criteria for JIA, worsening of more than 30% in no more than one of the criteria, and resolution of fever. In trial 2, after 32 weeks of open-label treatment with canakinumab, patients who had a response and underwent glucocorticoid tapering were randomly assigned to continued treatment with canakinumab or to placebo. The primary outcome was time to flare of systemic JIA. RESULTS: At day 15 in trial 1, more patients in the canakinumab group had an adapted JIA ACR 30 response (36 of 43 [84%], vs. 4 of 41 [10%] in the placebo group; P<0.001). In trial 2, among the 100 patients (of 177 in the open-label phase) who underwent randomization in the withdrawal phase, the risk of flare was lower among patients who continued to receive canakinumab than among those who were switched to placebo (74% of patients in the canakinumab group had no flare, vs. 25% in the placebo group, according to Kaplan-Meier estimates; hazard ratio, 0.36; P = 0.003). The average glucocorticoid dose was reduced from 0.34 to 0.05 mg per kilogram per day, and glucocorticoids were discontinued in 42 of 128 patients (33%). The macrophage activation syndrome occurred in 7 patients; infections were more frequent with canakinumab than with placebo. CONCLUSIONS: These two phase 3 studies s, SCOPUS: ar.j, info:eu-repo/semantics/published

Published
2012

41. Hantverkare i landskapet?

Author

Magnusson, Bo, Saltzman, Katarina, Magnusson, Bo, and Saltzman, Katarina

Published
2011

44. Medelpads klimat

Author

Magnusson, Bo, Grundström, Stefan, Magnusson, Bo, and Grundström, Stefan

Published
2010

45. Kunskapsstöd och kvalitetssäkring inom landskapsvården

Author

Magnusson, Bo and Magnusson, Bo

Abstract

Utredningsarbete för Hantverkslaboratoriet dnr 262/09. Utredningsarbete vad gäller byggandet av ett Hantverkslaboratorium i Mariestad på uppdrag av Riksantikvarieämbetet.

Published
2009

46. Miljö- och utvecklingsfrågor i Korca-regionen, Albanien

Author

Magnusson, Bo and Magnusson, Bo

Abstract

Albanien? Kan man komma in där? Så frågade en medpassagerare oss närvi satt på flyget hem från Albanien efter en mellanlandning i Wien. Javisstkan man komma in i Albanien, svarade jag, och jag hoppas verkligen attfler åker dit. Det är ett fantastiskt land på många sätt, vacker och storslagennatur, intressant historia, vänliga människor och god mat. Vad kanman mer begära.

Published
2008

50. Migration, Demograpy and Economic growth - A European Perspective : Discussion Paper European Economic Integration in Swedish Research

Author

Schuller, Bernd-Joachim, Magnusson, Bo, Schuller, Bernd-Joachim, and Magnusson, Bo

Abstract

As well known and much discussed, the European demographic development will mean problems for economic growth in the future. While the part of the population, which is older than 65, will continue to rise both relative to the labour force and in absolute terms, the active population between 20 and 64 probably will fall, at least relatively if not absolutely. In this paper we will treat two central questions. The first question is dealing with the demographic development and possible effects of migration in West Europe. Regarding the new member countries and the candidate countries, with the exception of Turkey, the demographic development here is even more difficult than the one in West Europe. Furthermore, migration to Europe could implicate a brain drain, which may deteriorate the economic and social situation in the countries of emigration. In this part we even will discuss, whether the population situation in Europe could lead to an enlargement of the EU or other arrangements of co-operation with countries, which traditionally are not seen as candidates for membership. The second main question in the paper will discuss the implications of the population development and of migration for economic growth. A difference can be made between growth of total GDP, GDP per head of population and GDP per employed person. Yet the main emphasis of the empirical growth discussion will deal with GDP pc. We will even discus, whether the possibilities of falling growth could be leveled out by higher formation of physical and human capital, changes of participation rates and working hours., 26 s.

Published
2006

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