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1. Damage to residual stand caused by mechanized selection harvest in uneven-aged Picea abies dominated stands

Author

Modig, Emil, Magnusson, Bo, Valinger, Erik, Cedergren, Jonas, and Lundqvist, Lars

Subjects
Forestry, SD1-669.5
Abstract

Permanent field plots were established in two uneven-aged Norway spruce (Picea abies (L.) Karst) dominated stands in west-central Sweden. The objective was to quantify level and type of damage caused by harvesting and to quantify the difference between two treatments: T20) only skid road harvest (20 m distance between ca. 4 m wide roads), and T40) skid road harvest (40 m distance between ca. 4 m wide roads) combined with thinning between the roads. In T40, the goal was to harvest approximately the same standing volume as in T20. After harvest, two circular sample plots (radius 18 m, i.e. 1018 m) were established at random locations within each treated area. All mechanical damage on the stem caused by harvest was measured and registered, including bark stripping larger than 15 cm, stem broken or split, and tearing of branches causing damage on the stem. About 70â90 per cent of the damaged trees were smaller than 15 cm dbh. Very few trees larger than 25 cm dbh were damaged. In T20, more than 50 per cent of the damaged trees were located less than 5 m from the skid road, compared to less than 25 per cent for T40, in which more than 50 per cent of the damaged trees were located 5â10 m from the skid road. Creating only half the number of skid roads caused no more damage, and was probably more profitable because mean stem volume was about 1.5 times larger than in T20.22

Published
2012
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3. 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, and Martini, Alberto

Published
2016
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4. The PRINTO evidence-based proposal for glucocorticoids tapering/discontinuation in new onset juvenile dermatomyositis patients

Author

Giancane, Gabriella, Lavarello, Claudio, Pistorio, Angela, Oliveira, Sheila K., Zulian, Francesco, Cuttica, Ruben, Fischbach, Michel, Magnusson, Bo, Pastore, Serena, Marini, Roberto, Martino, Silvana, Pagnier, Anne, Soler, Christine, Staņēvicha, Valda, Ten Cate, Rebecca, Uziel, Yosef, Vojinovic, Jelena, Fueri, Elena, Ravelli, Angelo, Martini, Alberto, Ruperto, Nicolino, and for the Paediatric Rheumatology International Trials Organisation (PRINTO)

Published
2019
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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, Еkaterina, Panaviene, Violeta, Bader-Meunier, Brigitte, Anton, Jordi, Nielsen, Susan, De Benedetti, Fabrizio, Kamphuis, Sylvia, Staņēviča, 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, and for the Paediatric Rheumatology International Trials Organisation (PRINTO), BiKeR and the board of the Swedish Registry

Published
2018
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6. Consensus-based recommendations for the management of juvenile dermatomyositis

Author

Enders, Felicitas Bellutti, 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
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7. Using Acceptance and Commitment Therapy in the Rehabilitation of an Adolescent Female with Chronic Pain: A Case Example

Author

Wicksell, Rikard K., Dahl, JoAnne, and Magnusson, Bo

Abstract

This case example illustrates how Acceptance and Commitment Therapy (ACT) within a behavior medicine approach was used in the rehabilitation of an adolescent with debilitating chronic pain. For chronic pain with unclear etiology (idiopathic pain), pharmacological therapy alone is often insufficient. Psychological treatment strategies have been developed and evaluated for adults with chronic pain. However, few such studies have been conducted with youths. To date, there is limited empirical evidence regarding the effectiveness of psychological treatment for generalized musculoskeletal pain syndromes in children and adolescents. This patient was a 14-year-old girl severely disabled by idiopathic generalized pain. It was hypothesized that avoidance of pain and pain-related stimuli was central to the subject's disability. ACT, a development of cognitive behavior therapy, was used as the treatment model in this study, focusing on building the behavior repertoire in valued life directions rather than emphasizing reductions in pain and distress. As the subject moved in valued directions, exposure to avoided pain stimuli took place naturally. Following treatment, improvements in valued life activities and functional ability was seen, as evidenced by increased school attendance, lower pain ratings, and individual goal achievement. The outcome of this treatment indicates that ACT and a behavioral medicine approach can be useful in the rehabilitation of young people with chronic disabling pain. Empirical studies are needed to investigate the clinical effectiveness of this approach.

Published
2005
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8. Tapering Canakinumab Monotherapy in Patients with Systemic Juvenile Idiopathic Arthritis in Clinical Remission: Results from an Open‐label, Randomized Phase IIIb/IV Study

Author

Pierre, Quartier, Ekaterina, Alexeeva, Constantin, Tamàs, Vyacheslav, Chasnyk, Nico, Wulffraat, Karin, Palmblad, Carine, Wouters, Hermine, Brunner, Katherine, Marzan, Rayfel, Schneider, Gerd, Horneff, Martini, Alberto, Jordi, Anton, Xiaoling, Wei, Alan, Slade, Ruperto, Nicolino, Ken, Abrams, Wolfgang, Emminger, Andrea, Ulbrich, Sugarka, Fodor, Lien, Desomer, Bernard, Lauwerys, Bénédicte, Brichard, Cécile, Boulanger, Gabriel, Levy, Laurence, Goffin, Phu Quoc Le, Marcia, Bandeira, Christina Feitosa Pelajo, Sheila Knupp Feitosa, Christianne, Costa, Marta Cristine Felix Rodrigues, Clovis Artur Almeida da Silva, Lucia Maria Mattei de, Katia, Kozu, Ronald, Laxer, Kristin, Houghton, Lori, Tucker, Kimberly, Morishita, Agnes, Mogenet, Richard, Mouy, Brigitte Bader Meunier, Candice, Meyzer, Michaela, Semeraro, Ouafa, Ben‐brahim, Isabelle, Kone‐paut, Caroline, Galeotti, Linda, Rossi, Perrine, Dusser, Bilade, Cherquaoui, Alexandre, Belot, Agnes, Duquesne, Freychet, Caroline, Laurent, Audrey, Marine, Desjonqueres, Ivan, Foeldvari, Antonia, Kienast, Barbara, Willig, Deborah, Barthel, Joachim, Peitz, Stefanie, Wintrich, Tilman Felix Geikowski, Anna Carina Schulz, Markus, Hufnagel, Marc, Hirdes, Rouven, Kubicki, Janbernd, Kirschner, Ales, Janda, Andre, Jacob, Cornelia, Emerich, Anna, Raab, Gonza, Ngoumou, Kirsten, Minden, Mareike, Lieber, Sae‐Lim von Stuckrad, Jasmin Kuemmerle Deschner, Sandra, Hansmann, Tom, Schleich, Ines Maria Magunia, Joachim, Riethmuller, Nicole, Anders, Hartwig, Lehmann, Jan de Laffolie, Thomas, Lutz, Juergen, Grulich‐henn, Johannes, Pfeil, Astrid, Helling‐bakki, Ralf, Trauzeddel, Daniel, Haselbusch, Henryk, Kolbeck, Elisabeth, Weissbarth‐riedel, Anja, Froehlich, Andrea, Ponyi, Diana, Garan, Ilonka, Orban, Krisztina, Sevcic, Yonatan, Butbul, Riva, Brik, Philip, Hashkes, Ori, Toker, Ruby, Haviv, Yosef, Uziel, Rubi, Haviv, Veronica, Moshe, Michal, Rothschild, Liora, Harel, Gil, Amarilyo, Rotem, Tal, Mohamad Hamad Said, Irit, Tirosh, Shiri, Spielman, Maya, Gerstein, Ravelli, Angelo, Schiappapietra, Benedetta, Varnier, GIULIA CAMILLA, Finetti, Martina, Marasini, Maurizio, Caorsi, Roberta, Rosina, Silvia, Federici, Silvia, Irene, Pontikaki, Pier Luigi Meroni, Valeri, Gerloni, Nicola, Ughi, Tania, Ubiali, Maria, Alessio, Roberto Della Casa, Sebastiaan Jozef Vastert, Joost Frans Swart, van Royen‐Kerhof, A., Ellen, Schatorje, Van Iperen‐Schutte, G., Lidia, Rutkowska‐sak, Izabela, Szczygielska, Malgorzata, Kwiatkowska, Maria, Marusak‐banacka, Piotr, Gietka, Kseniya, Isaeva, Rina, Denisova, Ludmila, Snegireva, Margarita, Dubko, Mikhail, Kostik, Natalia, Buchinskaia, Olga, Kalashnikova, Sergey, Avrusin, Vera, Masalova, Esmeralda Nunez Cuadros, Gisela, Diez, Rocio Galindo Zavala, Rosa Bou Torrent, Estibaliz, Iglesias, Joan, Calzada, Violeta, Bittermann, Alina Lucica Boteanu, Maria Luz Gamir, Inmaculada, Calvo, Berta, Lopez, Isabel, Gonzalez, Laura, Fernandez, Daniel Clemente Garulo, Juan Carlos Lopez Robledillo, Rosa, Merino, Rosa, Alcobendas, Agustin, Remesal, Sara, Murias, Magnusson, Bo, Ozgur, Kasapcopur, Kenan, Barut, Amra, Adrovic, Sezgin, Sahin, Muferet, Erguven, Refia Gozdenur Savci, Seza, Ozen, Selcan, Demir, Yelda, Bilginer, Zehra Serap Avci, Ezgi Deriz Batu, Andreas, Reiff, Anusha, Ramanatham, Diana, Brown, Bracha, Shaham, Shirley, Parks, Michal, Cidon, Gloria, Higgins, Charles, Spencer, Jenny, Rossette, Karla, Jones, Sharon Bout Tabaku, Shelli, Farley, Shoghik, Akoghlanian, Quartier, Pierre, Alexeeva, Ekaterina, Tamàs, Constantin, Chasnyk, Vyacheslav, Wulffraat, Nico, Palmblad, Karin, Wouters, Carine, Brunner, Hermine, Marzan, Katherine, Schneider, Rayfel, Horneff, Gerd, Martini, Alberto, Anton, Jordi, Wei, Xiaoling, Slade, Alan, Ruperto, Nicolino, Abrams, Ken, Emminger, Wolfgang, Ulbrich, Andrea, Fodor, Sugarka, Desomer, Lien, Lauwerys, Bernard, Brichard, Bénédicte, Boulanger, Cécile, Levy, Gabriel, Goffin, Laurence, Quoc Le, Phu, Bandeira, Marcia, Feitosa Pelajo, Christina, Knupp Feitosa, Sheila, Costa, Christianne, Cristine Felix Rodrigues, Marta, Artur Almeida da Silva, Clovi, Maria Mattei de, Lucia, Kozu, Katia, Laxer, Ronald, Houghton, Kristin, Tucker, Lori, Morishita, Kimberly, Mogenet, Agne, Mouy, Richard, Bader Meunier, Brigitte, Meyzer, Candice, Semeraro, Michaela, Ben‐brahim, Ouafa, Kone‐paut, Isabelle, Galeotti, Caroline, Rossi, Linda, Dusser, Perrine, Cherquaoui, Bilade, Belot, Alexandre, Duquesne, Agne, Caroline, Freychet, Audrey, Laurent, Desjonqueres, Marine, Foeldvari, Ivan, Kienast, Antonia, Willig, Barbara, Barthel, Deborah, Peitz, Joachim, Wintrich, Stefanie, Felix Geikowski, Tilman, Carina Schulz, Anna, Hufnagel, Marku, Hirdes, Marc, Kubicki, Rouven, Kirschner, Janbernd, Janda, Ale, Jacob, Andre, Emerich, Cornelia, Raab, Anna, Ngoumou, Gonza, Minden, Kirsten, Lieber, Mareike, von Stuckrad, Sae‐lim, Kuemmerle Deschner, Jasmin, Hansmann, Sandra, Schleich, Tom, Maria Magunia, Ine, Riethmuller, Joachim, Anders, Nicole, Lehmann, Hartwig, de Laffolie, Jan, Lutz, Thoma, Grulich‐henn, Juergen, Pfeil, Johanne, Helling‐bakki, Astrid, Trauzeddel, Ralf, Haselbusch, Daniel, Kolbeck, Henryk, Weissbarth‐riedel, Elisabeth, Froehlich, Anja, Ponyi, Andrea, Garan, Diana, Orban, Ilonka, Sevcic, Krisztina, Butbul, Yonatan, Brik, Riva, Hashkes, Philip, Toker, Ori, Haviv, Ruby, Uziel, Yosef, Haviv, Rubi, Moshe, Veronica, Rothschild, Michal, Harel, Liora, Amarilyo, Gil, Tal, Rotem, Hamad Said, Mohamad, Tirosh, Irit, Spielman, Shiri, Gerstein, Maya, Ravelli, Angelo, Schiappapietra, Benedetta, Camilla Varnier, Giulia, Finetti, Martina, Marasini, Maurizio, Caorsi, Roberta, Rosina, Silvia, Federici, Silvia, Pontikaki, Irene, Luigi Meroni, Pier, Gerloni, Valeri, Ughi, Nicola, Ubiali, Tania, Alessio, Maria, DELLA CASA, Roberto, Jozef Vastert, Sebastiaan, Frans Swart, Joost, van Royen‐Kerhof, A., Schatorje, Ellen, Van Iperen‐Schutte, G., Rutkowska‐sak, Lidia, Szczygielska, Izabela, Kwiatkowska, Malgorzata, Marusak‐banacka, Maria, Gietka, Piotr, Isaeva, Kseniya, Denisova, Rina, Snegireva, Ludmila, Dubko, Margarita, Kostik, Mikhail, Buchinskaia, Natalia, Kalashnikova, Olga, Avrusin, Sergey, Masalova, Vera, Nunez Cuadros, Esmeralda, Diez, Gisela, Galindo Zavala, Rocio, Bou Torrent, Rosa, Iglesias, Estibaliz, Calzada, Joan, Bittermann, Violeta, Lucica Boteanu, Alina, Luz Gamir, Maria, Calvo, Inmaculada, Lopez, Berta, Gonzalez, Isabel, Fernandez, Laura, Clemente Garulo, Daniel, Carlos Lopez Robledillo, Juan, Merino, Rosa, Alcobendas, Rosa, Remesal, Agustin, Murias, Sara, Magnusson, Bo, Kasapcopur, Ozgur, Barut, Kenan, Adrovic, Amra, Sahin, Sezgin, Erguven, Muferet, Gozdenur Savci, Refia, Ozen, Seza, Demir, Selcan, Bilginer, Yelda, Serap Avci, Zehra, Deriz Batu, Ezgi, Reiff, Andrea, Ramanatham, Anusha, Brown, Diana, Shaham, Bracha, Parks, Shirley, Cidon, Michal, Higgins, Gloria, Spencer, Charle, Rossette, Jenny, Jones, Karla, Bout Tabaku, Sharon, Farley, Shelli, and Akoghlanian, Shoghik

Published
2021

9. Subcutaneous nodules as a clinical biomarker of Farber disease

Author

Mitchell, John, primary, Harmatz, Paul, additional, Selim, Laila, additional, Din, Iman Gamal El, additional, Mungan, Neslihan, additional, Bulut, Fatma, additional, Lampe, Christina, additional, Grant, Christina L., additional, Ferreira, Carlos R., additional, Puri, Ratna D., additional, Bijarnia-Mahay, Sunita, additional, Guelbert, Noberto, additional, Arslan, Nur, additional, Zaki, Maha S., additional, Kapoor, Seema, additional, Hahn, Andreas, additional, Magnusson, Bo, additional, Sundberg, Erik, additional, Ozen, Seza, additional, Batu, Ezgi D., additional, Di Rocco, Maja, additional, Gokcay, Gulden, additional, Crosby, Kathleen, additional, and Solyom, Alexander, additional

Published
2022
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10. Rate and Clinical Presentation of Macrophage Activation Syndrome in Patients With Systemic Juvenile Idiopathic Arthritis Treated With Canakinumab

Author

Grom, Alexei A., Ilowite, Norman T., Pascual, Virginia, Brunner, Hermine I., Martini, Alberto, Lovell, Daniel, Ruperto, Nicolino, Leon, Karolynn, Lheritier, Karine, Abrams, Ken, Cuttica, Ruben, Emminger, Wolfgang, Goffin, Laurence, Joos, Rik, Lauwerys, Bernard, Wouters, Carine, Hilário, Maria Odete Esteves, de Oliveira, Sheila Knupp Feitosa, Len, Claudio, Radominski, Sebastiao, Sztajnbok, Flavio Roberto, Haddad, Elie, Hofer, Michael, Houghton, Kristin, Huber, Adam, Saurenmann, Traudel, Schneider, Rayfel, Tucker, Lori, Bader-Meunier, Brigitte, Desjonqueres, Marine, Fischbach, Michel, Kone-Paut, Isabelle, Marie, Isabelle, Mogenet, Agnes, Mouy, Richard, Quartier, Pierre, Berner, Reinhard, Foeldvari, Ivan, Foell, Dirk, Frosch, Michael, Haas, Johannes-Peter, Horneff, Gerd, Hufnagel, Markus, Kallinich, Tilmann, Kuemmerle-Deschner, Jasmin, Lehmann, Hartwig, Lutz, Thomas, Thon, Angelika, Trauzeddel, Ralf, Tzaribachev, Nikolay, Weibarth-Riedel, Elisabeth, Chrousos, Georgios, Trachana, Maria, Vougiouka, Olga, Constantin, Tamas, Barash, Judith, Berkun, Yackov, Brik, Riva, Harel, Liora, Nahum, Amit, Pade, Shay, Uziel, Yosef, Alessio, Maria, Cimaz, Rolando, Corona, Fabrizia, Gerloni, Valeria, Wulffraat, N. M., Ferrandiz, Manuel, Rutkowska-Sak, Lidia, Alekseeva, Ekaterina, Chasnyk, Vyacheslav, Nasonov, Evgeny, Stanislav, Marina, Anton, Jordi, Calvo, Inmaculada, Gamir, Mari Luz, Robledillos, Juan Carlos, Magnusson, Bo, Erguven, Muferet, Kasapcopur, Ozgur, Ozdogan, Huri, Ozen, Seza, Unsal, Erbil, Chieng, Alice, Foster, Helen, McCann, Liza, Ramanan, Athimalaip, Southwood, Taunton, Wilkinson, Nicholas, Woo, Patricia, Higgins, Gloria Christine, Kingsbury, Daniel, Lopez-Benitez, Jorge, Marzan, Katherine, Morris, Paula, Natter, Marc, and Schikler, Kenneth Noel

Published
2016
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14. Two Randomized Trials of Canakinumab in Systemic Juvenile Idiopathic Arthritis

Author

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

Published
2012
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15. ASAH1 pathogenic variants associated with acid ceramidase deficiency: Farber disease and spinal muscular atrophy with progressive myoclonic epilepsy

Author

Elsea, Sarah H., primary, Solyom, Alexander, additional, Martin, Kirt, additional, Harmatz, Paul, additional, Mitchell, John, additional, Lampe, Christina, additional, Grant, Christina, additional, Selim, Laila, additional, Mungan, Neslihan Oneli, additional, Guelbert, Norberto, additional, Magnusson, Bo, additional, Sundberg, Erik, additional, Puri, Ratna, additional, Kapoor, Seema, additional, Arslan, Nur, additional, DiRocco, Maja, additional, Zaki, Maha, additional, Ozen, Seza, additional, Mahmoud, Iman G., additional, Ehlert, Karoline, additional, Hahn, Andreas, additional, Gokcay, Gulden, additional, Torcoletti, Marta, additional, and Ferreira, Carlos R., additional

Published
2020
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16. Farber disease (acid ceramidase deficiency) natural history study: Prospective and retrospective clinical data

Author

Mitchell, John, primary, Harmatz, Paul, additional, Grant, Christina, additional, Ferreira, Carlos R., additional, Lampe, Christina, additional, Selim, Laila, additional, el Din, Iman Gamal, additional, Mungan, Neslihan, additional, Bulut, Fatma D., additional, Puri, Ratna D., additional, Bijarnia-Mahay, Sunita, additional, Guelbert, Norberto, additional, Zaki, Maha S., additional, DiRocco, Maja, additional, Kapoor, Seema, additional, Magnusson, Bo, additional, Sundberg, Erik, additional, Arslan, Nur, additional, Makay, Balahan, additional, Hahn, Andreas, additional, Ozen, Seza, additional, Batu, Ezgi D., additional, Gokcay, Gulden, additional, Torcoletti, Marta, additional, and Solyom, Alexander, additional

Published
2020
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17. Predictors of poor response to methotrexate in polyarticular-course juvenile idiopathic arthritis: analysis of the PRINTO methotrexate trial

Author

Vilca, Iris, Munitis, Pablo Garcia, Pistorio, Angela, Ravelli, Angelo, Buoncompagni, Antonella, Bica, Blanca, Campos, Lucia, Häfner, Renate, Hofer, Michael, Ozen, Seza, Huemer, Christian, Bae, Sang Cheol, Sztajnbok, Flavio, Arguedas, Olga, Foeldvari, Ivan, Huppertz, Hans Iko, Gamir, Maria Luz, Magnusson, Bo, Dressler, Frank, Uziel, Yosef, van Rossum, Marion A, Hollingworth, Peter, Cawkwell, Gail, Martini, Alberto, and Ruperto, Nicolino

Published
2010
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18. Acid ceramidase deficiencypresenting as Farber disease: prospective and retrospective clinical data from an ongoing natural history study

Author

ÖNENLİ MUNGAN, HALİSE NESLİHAN, Selim, Laila, Torcoletti, Marta, Kimura, Alan, Mitchell, John, BULUT, FATMA DERYA, Lampe, Christina, Guelbert, Norberto, Grant, Co, Ferreira, Carlos, Gamal el Din, Iman, BijarniaMahay, Sunita, Kapoor, Seema, MAKAY, BALAHAN, Dirocco, Maja, Ozen, Seza, Sundberg, Erik, ARSLAN, NUR, Solyom, Alexander, Magnusson, Bo, Puri, Ratna, Deniz Batu, Ezgi, and Gokcay, Gulden

Published
2019

20. 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

21. 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

22. 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 and Hofer, Michael Alexeeva, Ekaterina Panaviene, Violeta and Bader-Meunier, Brigitte Anton, Jordi Nielsen, Susan De Benedetti, Fabrizio Kamphuis, Sylvia Stanevica, Valda and Tracahana, Maria Ailioaie, Laura Marinela Tsitsami, Elena and Klein, Ariane Minden, Kirsten Foeldvari, Ivan Haas, Johannes Peter Klotsche, Jens Horne, Anna Carin Consolaro, Alessandro and Bovis, Francesca Bagnasco, Francesca Pistorio, Angela and Martini, Alberto Wulffraat, Nico Ruperto, Nicolino Paediat Rheumatology Int Trials Or BiKeR Board Swedish Registry

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 is registered at ClinicalTrials.gov (NCT01399281) and at the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance (ENCePP) (http://www.encepp.eu/encepp/viewResource.htm?id=19362). The BiKeR registry is registered at ENCePP (http://www.encepp.eu/encepp/viewResource.htm?id=20591).

Published
2018

23. Farber disease (acid ceramidase deficiency): Data from an ongoing natural history study

Author

Solyom, Alexander, primary, Ferreira, Carlos, additional, Mitchell, John, additional, Guelbert, Norberto, additional, Mungan, Neslihan, additional, Bulut, Fatma, additional, Magnusson, Bo, additional, Sundberg, Erik, additional, Lampe, Christina, additional, Arslan, Nur, additional, Makay, Balahan, additional, Puri, Ratna, additional, Bijarnia-Mahay, Sunita, additional, Selim, Laila, additional, el Din, Iman Gamal, additional, Kapoor, Seema, additional, Di Rocco, Maja, additional, Ozen, Seza, additional, Batu, Ezgi Deniz, additional, Gokcay, Gulden, additional, Torcoletti, Marta, additional, Kimura, Alan, additional, and Harmatz, Paul, additional

Published
2019
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24. The European network for care of children with paediatric rheumatic diseases: care across borders

Author

Dolezalova, Pavla, primary, Anton, Jordi, additional, Avcin, Tadej, additional, Beresford, Michael W, additional, Brogan, Paul A, additional, Constantin, Tamas, additional, Egert, Yona, additional, Foeldvari, Ivan, additional, Foster, Helen E, additional, Hentgen, Veronique, additional, Kone-Paut, Isabelle, additional, Kuemmerle-Deschner, Jasmine B, additional, Lahdenne, Pekka, additional, Magnusson, Bo, additional, Martini, Alberto, additional, McCann, Liza, additional, Minden, Kirsten, additional, Ozen, Seza, additional, Schoemaker, Casper, additional, Quartier, Pierre, additional, Ravelli, Angelo, additional, Rumba-Rozenfelde, Ingrida, additional, Ruperto, Nicola, additional, Vastert, Sebastian, additional, Wouters, Carine, additional, Zulian, Francesco, additional, and Wulffraat, Nico M, additional

Published
2019
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26. 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

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

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

Subjects
Rheumatology, Immunology, Immunology and Allergy
Abstract

Objective: To develop response criteria for juvenile dermatomyositis (DM). Methods: We analyzed the performance of 312 definitions that used core set measures from either the International Myositis Assessment and Clinical Studies Group (IMACS) or the Paediatric Rheumatology International Trials Organisation (PRINTO) and were derived from natural history data and a conjoint analysis survey. They were further validated using data from the PRINTO trial of prednisone alone compared to prednisone with methotrexate or cyclosporine and the Rituximab in Myositis (RIM) trial. At a consensus conference, experts considered 14 top candidate criteria based on their performance characteristics and clinical face validity, using nominal group technique. Results: Consensus was reached for a conjoint analysis–based continuous model with a total improvement score of 0–100, using absolute percent change in core set measures of minimal (≥30), moderate (≥45), and major (≥70) improvement. The same criteria were chosen for adult DM/polymyositis, with differing thresholds for improvement. The sensitivity and specificity were 89% and 91–98% for minimal improvement, 92–94% and 94–99% for moderate improvement, and 91–98% and 85–86% for major improvement, respectively, in juvenile DM patient cohorts using the IMACS and PRINTO core set measures. These criteria were validated in the PRINTO trial for differentiating between treatment arms for minimal and moderate improvement (P = 0.009–0.057) and in the RIM trial for significantly differentiating the physician's rating for improvement (P < 0.006). Conclusion: The response criteria for juvenile DM consisted of a conjoint analysis–based model using a continuous improvement score based on absolute percent change in core set measures, with thresholds for minimal, moderate, and major improvement.

Published
2017

28. 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 Berit, Ruperto, Nicolino, Santos, Maria José, Schanberg, Laura E., Thomson, Wendy, Suijlekom-Smit, Lisette van, Wulffraat, Nico, Hyrich, Kimme, and Pediatrics

Subjects
Medicin och hälsovetenskap, Registry, lcsh:Diseases of the musculoskeletal system, Pharmacosurveillance, Adolescent, VDP::Medisinske Fag: 700::Helsefag: 800::Epidemiologi medisinsk og odontologisk statistikk: 803, Medical and Health Sciences, Cohort Studies, VDP::Medisinske Fag: 700::Klinisk medisinske fag: 750::Pediatri: 760, Observational study, VDP::Medical disciplines: 700::Clinical medical disciplines: 750::Pediatrics: 760, Journal Article, Humans, Pediatric rheumatology, Registries, Child, lcsh:RJ1-570, Australia, lcsh:Pediatrics, VDP::Medical disciplines: 700::Clinical medical disciplines: 750::Rheumatology: 759, Juvenile idiopathic arthritis, Arthritis, Juvenile, VDP::Medisinske Fag: 700::Klinisk medisinske fag: 750::Reumatologi: 759, Europe, Observational Studies as Topic, VDP::Medical disciplines: 700::Health sciences: 800::Epidemiology medical and dental statistics: 803, Research Design, Antirheumatic Agents, North America, lcsh:RC925-935, Research Article
Abstract

BackgroundTo characterize the existing national and multinationalregistries and cohortstudies in juvenile idiopathic arthritis (JIA) and identify differences as well asareas of potential future collaboration.MethodsWe surveyed investigators from North America, Europe, and Australia aboutexisting JIA cohort studies and registries. We excluded crosssectionalstudies.We captured information about study design, duration, location, inclusioncriteria, data elements and collection methods.criteria, data elements and collection methods.ResultsWe received survey results from 18 studies, including 11 national and 7 multinationalstudies representing 37 countries in total. Study designs includedinception cohorts, prevalent disease cohorts, and new treatment cohorts (severalof which contribute to pharmacosurveillance activities). Despite numerousdifferences, the data elements collected across the studies was quite similar, withmost studies collecting at least 5 of the 6 American College of Rheumatologycore set variables and the data needed to calculate the 3variableclinical juvenile disease activity score. Most studies were collecting medication initiation anddiscontinuation dates and were attempting to capture serious adverse events.ConclusionThere is a widerange of large, ongoing JIA registries and cohort studies aroundthe world. Our survey results indicate significant potential for futurecollaborative work using data from different studies and both combined andcomparative analyses.

Published
2017
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29. 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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30. 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

31. 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

32. 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

33. 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

34. 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

35. Farber disease acid ceramidase deficiency is more common than previously thought and slowly progressive disease may only be diagnosed in adulthood

Author

Levade, Thierry, MAKAY, BALAHAN, Ozen, Seza, BATU, EZGİ DENİZ, Kariminejad, Aa, Bonafe, Luisa, Furga, Superti A, Hadipour, Zahra, Hadipour, Fatima, Tanpaiboon, Pranoot, Guelbert, Norberto, Di Rocco, Maja, Magnusson, Bo, Grigelioniene, Giedre, Cuevas Cid, Alejandra, Ehlert, Karoline, Back, Michael, Simonaro, Colagera, Shuchman, Edward, ARSLAN, NUR, Solyom, Alexander, Mitchell, John, and Huegle, Boris

Published
2016

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

Author

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

Published
2017
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37. 2016 American College of Rheumatology/European League Against Rheumatism Criteria for Minimal, Moderate, and Major Clinical Response in Juvenile Dermatomyositis

Author

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

Published
2017
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38. Acid Ceramidase Deficiency is characterized by a unique plasma cytokine and ceramide profile that is altered by therapy

Author

Dworski, Shaalee, primary, Lu, Ping, additional, Khan, Aneal, additional, Maranda, Bruno, additional, Mitchell, John J., additional, Parini, Rossella, additional, Di Rocco, Maja, additional, Hugle, Boris, additional, Yoshimitsu, Makoto, additional, Magnusson, Bo, additional, Makay, Balahan, additional, Arslan, Nur, additional, Guelbert, Norberto, additional, Ehlert, Karoline, additional, Jarisch, Andrea, additional, Gardner-Medwin, Janet, additional, Dagher, Rawane, additional, Terreri, Maria Teresa, additional, Lorenco, Charles Marques, additional, Barillas-Arias, Lilianna, additional, Tanpaiboon, Pranoot, additional, Solyom, Alexander, additional, Norris, James S., additional, He, Xingxuan, additional, Schuchman, Edward H., additional, Levade, Thierry, additional, and Medin, Jeffrey A., additional

Published
2017
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39. 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, and Quartier, Pierre

Subjects
DRUG therapy for rheumatism, RHEUMATOLOGY, BIOAVAILABILITY, HEALTH services accessibility, INTERNET, MEDICAL care, MEDICAL quality control, MEDICAL research, NEEDS assessment, PEDIATRICS, RHEUMATISM, RHEUMATOLOGISTS, SURVEYS, PATIENT-centered care, CHILDREN, SOCIETIES
Abstract

The article discusses research which examined delivery of paediatric rheumatology (PR) services and care in Europe. Topics explored include the establishment of the Single Hub and Access point for paediatric Rheumatology in Europe (SHARE) by the European Union (EU), the survey administered which addressed PR care organization and access in the region, and brief details about the PR care standard and training program availability.

Published
2019
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40. 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

41. Single Hub and Access Point for Paediatric Rheumatology in Europe (SHARE)- Evidence Based Recommendations for Diagnosis and Treatment of Juvenile Idiopathic Arthritis

Author

Vastert, S. J., Boom, Victor, Anton, Jordi, Constantin, Tamas, Pavla Doležalová, Horneff, Gerd, Lahdenne, Pekka, Magnusson, Bo, Minden, Kirsten, Nistala, K., Quartier, Pierre, Rumba-Rozenfelde, Ingrida, Ruperto, Nicolino, Piccolo, Vanessa Remy, Russo, Ricardo A. G., Uziel, Yosef, Wouters, Carine, Martini, Alberto, Ravelli, Angelo, Foster, Helen, and Wulffraat, Nico

Published
2014

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

Author

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

Published
2016
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44. Farber disease is characterized by typical features but a broad phenotypic spectrum: Selected information from a cohort of 37 patients

Author

Solyom, Alexander, primary, Mitchell, John, additional, Ehlert, Karoline, additional, Tanpaiboon, Pranoot, additional, Magnusson, Bo, additional, Grigelioniene, Giedre, additional, Hügle, Boris, additional, Guelbert, Norberto, additional, Arslan, Nur, additional, Makay, Balahan, additional, Ozen, Seza, additional, Batu, Ezgi Deniz, additional, Selim, Laila, additional, Hadipour, Zahra, additional, Hadipour, Fatemeh, additional, Cuevas-Cid, Alejandra, additional, Puri, Ratna, additional, Simonaro, Calogera, additional, He, Xingxuan, additional, and Schuchman, Edward, additional

Published
2016
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45. 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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47. 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

49. SHARE – workpackage 5: evidence based recommendations for diagnosis and treatment of juvenile dermatomyositis

Author

Enders, Felicitas Bellutti, primary, Bader-Meunier, Brigitte, additional, Baildam, Eileen, additional, Constantin, Tamas, additional, Dolezalova, Pavla, additional, Feldman, Brian, additional, Lahdenne, Pekka, additional, Magnusson, Bo, additional, Nistala, Kiran, additional, Pilkington, Clarissa, additional, Ravelli, Angelo, additional, Russo, Ricardo, additional, van Brussel, Marco, additional, van der Net, JanJaap, additional, Wedderburn, Lucy, additional, Vastert, Bas, additional, Wulffraat, Nico, additional, McCann, Liza, additional, and van Royen-Kerkhof, Annet, additional

Published
2014
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50. Arbete i utomhustruckar på sågverk - en utvärdering av kamera- och monitorstöd

Author

Karlsson, Göran, Cederqvist, Tony, and Magnusson, Bo

Subjects
Naturvetenskap, Natural Sciences
Abstract

Sågverkstruckar har utrustats med kameror och monitorer för att ge förarna bättre sikt vid körning, lastning och lossning. Via bl a mätning av nackrörelserna har det fastställts att de, vid höga lyft, besvärande bakåtböjningarna av huvudet har minskat radikalt så också belastningarna på nacke och skuldror. Med de bättre siktförhållandena minskade även hanteringsskadorna på virket.

Published
2001

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