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2. The role of complement in kidney disease: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Author

Alberici, Federico, Antonucci, Luca, Avcin, Tadej, Bagga, Arvind, Bajema, Ingeborg M., Blasco, Miquel, Chauvet, Sophie, Cook, H. Terence, Cravedi, Paolo, Dragon-Durey, Marie-Agnès, Fischer, Lauren, Fogo, Agnes B., Frazer-Abel, Ashley, Frémeaux-Bacchi, Véronique, Görlich, Nina, Haas, Mark, Humphreys, Alister, Jha, Vivekanand, Jauhal, Arenn, Kavanagh, David, Kronbichler, Andreas, Lafayette, Richard A., Lanning, Lynne D., Lemaire, Mathieu, Le Quintrec, Moglie, Licht, Christoph, Liew, Adrian, McAdoo, Steve, Medjeral-Thomas, Nicholas R., Meroni, Pier Luigi, Morelle, Johann, Nester, Carla M., Praga, Manuel, Ramachandran, Raja, Reich, Heather N., Remuzzi, Giuseppe, Rodríguez de Córdoba, Santiago, Robinson, Gary, Ronco, Pierre, Rossing, Peter, Salant, David J., Sethi, Sanjeev, Silkjaer, Marianne, Song, Wen-chao, Spoleti, Fabrizio, Taylor, Ronald P., van de Kar, Nicole C.A.J., van Kooten, Cees, Woodward, Len, Zhang, Yuzhou, Zipfel, Peter F., Zuccato, Marco, Vivarelli, Marina, Barratt, Jonathan, Beck, Laurence H., Jr., Fakhouri, Fadi, Gale, Daniel P., Goicoechea de Jorge, Elena, Mosca, Marta, Noris, Marina, Pickering, Matthew C., Susztak, Katalin, Thurman, Joshua M., Cheung, Michael, King, Jennifer M., Jadoul, Michel, Winkelmayer, Wolfgang C., and Smith, Richard J.H.

Published
2024
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4. The HyperPed-COVID international registry: Impact of age of onset, disease presentation and geographical distribution on the final outcome of MIS-C

Author

Caorsi, Roberta, Consolaro, Alessandro, Speziani, Camilla, Sozeri, Betul, Ulu, Kadir, Faugier-Fuentes, Enrique, Menchaca-Aguayo, Hector, Ozen, Seza, Sener, Seher, Akhter Rahman, Shahana, Imnul Islam, Mohammad, Haerynck, Filomeen, Simonini, Gabriele, Mastri, Mariel Viviana, Avcin, Tadej, Sršen, Saša, de Albuquerque Pedrosa Fernandes, Taciana, Stanevicha, Valda, Vojinovic, Jelena, Sobh, Ali, Fingerhutova, Sarka, Minxova, Lenka, Gagro, Alenka, Rodrigues Fonseca, Adriana, Pandya, Devang, Varbanova, Boriana, Sánchez-Manubens, Judith, Ganeva, Margarita, Montin, Davide, Boyarchuk, Oksana, Minghini, Andrea, Bracaglia, Claudia, Brogan, Paul, Candotti, Fabio, Cattalini, Marco, Meyts, Isabelle, Minoia, Francesca, Taddio, Andrea, Wouters, Carine, De Benedetti, Fabrizio, Bovis, Francesca, Ravelli, Angelo, Ruperto, Nicolino, Gattorno, Marco, Bilginer, Yelda, Laila, Kamrul, Islam, Mohammed Mahbubul, Meertens, Bram, Hoste, Levi, Dehoorne, Joke, Schelstraete, Petra, Vandekerckhove, Kristof, Willems, Jef, Matthijs, Inge, Filocamo e Gisella Beatrice Beretta, Giovanni, Magalhaes, Claudia Saad, Chubata, Oksana, Ricci, Francesca, Vukovic, Antonija, Temelkova, Katya, Avramovic, Mojca Zajc, Emersic, Nina, Bizjak, Masa, Vesel, Tina, Rodrigues, Marta Felix, Gasparello de Almeida, Rozana, Lukjanovica, Kristine, Elnagdy, Marwa H., Soliman, Ahmed, Terifajova, Eva, Brejchova, Ivana, Magner, Martin, Myrup, Charlotte, Vougiouka, Olga, Jelusic, Marija, La Torre, Francesco, Rigante, Donato, Maggio, Maria Cristina, Verdoni, Lucio, Rubio-Perez, Nadina, Cornejo, Gabriel Vega, Villarreal Trevino, Ana Victoria, Brito, Iva, Oliveira-Ramos, Filipa, Alexeeva, Ekaterina, Chasnyk, Vyacheslav, Arkachaisri, Thaschawee, Boyko, Yaryna, Vyzhga, Yulia, and Samsonenko, Svitlana

Published
2024
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6. Autoantibodies and Kidney Diseases

Author

Topaloglu, Rezan, Levart, Tanja Kersnik, Nagata, Michio, Avcin, Tadej, Emma, Francesco, editor, Goldstein, Stuart L., editor, Bagga, Arvind, editor, Bates, Carlton M., editor, and Shroff, Rukshana, editor

Published
2022
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7. The Role of Complement in Kidney Disease: Conclusions From a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Author

Vivarelli, Marina, primary, Barratt, Jonathan, additional, Beck, Laurence H., additional, Fakhouri, Fadi, additional, Gale, Daniel P., additional, de Jorge, Elena Goicoechea, additional, Mosca, Marta, additional, Noris, Marina, additional, Pickering, Matthew C., additional, Susztak, Katalin, additional, Thurman, Joshua M., additional, Cheung, Michael, additional, King, Jennifer M., additional, Jadoul, Michel, additional, Winkelmayer, Wolfgang C., additional, Smith, Richard J.H., additional, Alberici, Federico, additional, Antonucci, Luca, additional, Avcin, Tadej, additional, Bagga, Arvind, additional, Bajema, Ingeborg M., additional, Blasco, Miquel, additional, Chauvet, Sophie, additional, Cook, H. Terence, additional, Cravedi, Paolo, additional, Dragon-Durey, Marie-Agnès, additional, Fischer, Lauren, additional, Fogo, Agnes B., additional, Frazer-Abel, Ashley, additional, Frémeaux-Bacchi, Véronique, additional, Görlich, Nina, additional, Haas, Mark, additional, Humphreys, Alister, additional, Jha, Vivekanand, additional, Jauhal, Arenn, additional, Kavanagh, David, additional, Kronbichler, Andreas, additional, Lafayette, Richard A., additional, Lanning, Lynne D., additional, Lemaire, Mathieu, additional, Le Quintrec, Moglie, additional, Licht, Christoph, additional, Liew, Adrian, additional, McAdoo, Steve, additional, Medjeral-Thomas, Nicholas R., additional, Meroni, Pier Luigi, additional, Morelle, Johann, additional, Nester, Carla M., additional, Praga, Manuel, additional, Ramachandran, Raja, additional, Reich, Heather N., additional, Remuzzi, Giuseppe, additional, Rodríguez de Córdoba, Santiago, additional, Robinson, Gary, additional, Ronco, Pierre, additional, Rossing, Peter, additional, Salant, David J., additional, Sethi, Sanjeev, additional, Silkjaer, Marianne, additional, Song, Wen-chao, additional, Spoleti, Fabrizio, additional, Taylor, Ronald P., additional, van de Kar, Nicole C.A. J., additional, van Kooten, Cees, additional, Woodward, Len, additional, Zhang, Yuzhou, additional, Zipfel, Peter F., additional, and Zuccato, Marco, additional

Published
2024
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8. Physician Global Assessment International Standardisation COnsensus in Systemic Lupus Erythematosus: the PISCOS study

Author

Appenzeller, Simone, Aranow, Cynthia, Askanase, Anca, Avcin, Tadej, Bae, Sang-Cheol, Bertsias, George, Bonfa, Eloisa, Cairoli, Ernesto, Cardiel, Mario H, Cervera, Ricard, Chasset, François, Chizzolini, Carlo, Clarke, Ann E, Conti, Fabrizio, Costedoat-Chalumeau, Nathalie, Czirják, László, Doria, Andrea, Dörner, Thomas, Espinosa, Gerard, Fischer-Betz, Rebecca, Garcìa, Mercedes, Gladman, Dafna D, González, Luis A, Gunnarsson, Iva, Hamijoyo, Laniyati, Hanly, John G, Hasni, Sarfaraz A, Houssiau, Frédéric A, Inanç, Murat, Inês, Luís S, Isenberg, David, Jacobsen, Soren, Jan Wu, Yeong-Jian, Kaneko, Yuko, Katsumata, Yasuhiro, Lau, Chak S, Legge, Alexandra C, Lerang, Karoline, Limper, Maarten, Louthrenoo, Worawit, Luo, Shue-Fen, Marinho, António, Massardo, Loreto, Mathian, Alexis, Mosca, Marta, Nikpour, Mandana, Pego-Reigosa, José M, Peschken, Christine A, Pons-Estel, Bernardo A, Pons-Estel, Guillermo J, Rahman, Anisur, Rednic, Simona, Ribi, Camillo, Ruiz-Irastorza, Guillermo, Sato, Emilia I, Saxena, Amit, Schneider, Matthias, Sebastiani, Gian Domenico, Strand, Vibeke, Svenungsson, Elisabet, Tanaka, Yoshiya, Tazi Mezalek, Zoubida, Tee, Michael L, Tincani, Angela, Touma, Zahi, Troldborg, Anne, Vasconcelos, Carlos, Vinet, Évelyne, Vital, Edward M, Voskuyl, Alexandre E, Voss, Anne, Wallace, Daniel, Ward, Michael, Zamora, Leonid D, Piga, Matteo, Chessa, Elisabetta, Morand, Eric F, Ugarte-Gil, Manuel F, Tektonidou, Maria, van Vollenhoven, Ronald, Petri, Michelle, and Arnaud, Laurent

Published
2022
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9. Multisystem inflammatory syndrome in children: A review.

Author

Benvenuto, Simone, Avcin, Tadej, and Taddio, Andrea

Subjects
*MULTISYSTEM inflammatory syndrome in children, *INFLAMMATION, *INTRAVENOUS immunoglobulins, *GLUCOCORTICOIDS, *LYMPHOPENIA
Abstract

Aim: To comprehensively review the literature on multisystem inflammatory syndrome in children (MIS‐C). Methods: Narrative review of relevant studies published between April 2020 and January 2024. Results: MIS‐C is a SARS‐CoV‐2‐related hyperinflammatory syndrome developing 2–6 weeks after COVID‐19 in genetically susceptible individuals. Persisting fever, mucocutaneous manifestations, GI and cardiac involvement, together with lymphopenia and elevated inflammatory and cardiac markers are the main clinical features. It is believed to recognise some pathogenetic and clinical overlap with Kawasaki disease. New case definitions have been proposed after an assessment of the diagnostic performance of existing criteria; epidemiological criterion is however progressively losing its usefulness as the pandemic turns into an endemic and in the areas with the highest rates of COVID‐19 vaccination. Current guidelines recommend both intravenous immunoglobulin and glucocorticoids in the first‐line immunomodulatory treatment, mainly based on comparative retrospective cohorts; the actual role of biologics remains to be adequately established. Strict follow‐up is mandatory, especially for those with severe cardiac involvement, as longitudinal studies evaluate the long‐term evolution of cardiac damage. Conclusion: In this paper, we review the epidemiological, pathogenetic, clinical and prognostic features of MIS‐C, and outline the main questions which still remain unanswered after more than 3 years of research. [ABSTRACT FROM AUTHOR]

Published
2024
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10. Extraintestinal Manifestations of Inflammatory Bowel Disease

Author

Rusoniene, Skirmante, Urbonas, Vaidotas, Avcin, Tadej, Emmi, Lorenzo, Series Editor, Prisco, Domenico, Series Editor, Salvarani, Carlo, Editorial Board Member, Sinico, Renato Alberto, Editorial Board Member, Meroni, Pier Luigi, Editorial Board Member, Roccatello, Dario, Editorial Board Member, Matucci-Cerinic, Marco, Editorial Board Member, Gattorno, Marco, Editorial Board Member, de Benedetti, Fabrizio, Editorial Board Member, Cimaz, Rolando, Editorial Board Member, Plebani, Alessandro, Editorial Board Member, Baldari, Cosima, Editorial Board Member, D'Elios, Mario Milco, Editorial Board Member, and Vaglio, Augusto, Editorial Board Member

Published
2020
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11. The outcomes of children born to mothers with autoimmune rheumatic diseases

Author

Immuno/reuma ERN, Andreoli, Laura, Andersen, Jeanette, Avcin, Tadej, Chambers, Christina D., Fazzi, Elisa M., Marlow, Neil, Wulffraat, Nico M., Tincani, Angela, Immuno/reuma ERN, Andreoli, Laura, Andersen, Jeanette, Avcin, Tadej, Chambers, Christina D., Fazzi, Elisa M., Marlow, Neil, Wulffraat, Nico M., and Tincani, Angela

Published
2024

12. Differences Sustained Between Diffuse and Limited Forms of Juvenile Systemic Sclerosis in an Expanded International Cohort

Author

Foeldvari, Ivan, Klotsche, Jens, Kasapcopur, Ozgur, Adrovic, Amra, Terreri, Maria Teresa, Sakamoto, Ana Paula, Stanevicha, Valda, Sztajnbok, Flavio, Anton, Jordi, Feldman, Brian, Alexeeva, Ekaterina, Katsicas, Maria, Smith, Vanessa, Avcin, Tadej, Marrani, Edoardo, Kostik, Mikhail, Lehman, Thomas, Sifuentes‐Giraldo, Walter‐Alberto, Vasquez‐Canizares, Natalia, Appenzeller, Simone, Janarthanan, Mahesh, Moll, Monika, Nemcova, Dana, Patwardhan, Anjali, Santos, Maria Jose, Sawhney, Sujata, Schonenberg‐Meinema, Dieneke, Battagliotti, Cristina, Berntson, Lillemor, Bica, Blanca, Brunner, Jürgen, Costa‐Reis, Patricia, Eleftheriou, Despina, Harel, Liora, Horneff, Gerd, Kaiser, Daniela, Kallinich, Tilmann, Lazarevic, Dragana, Minden, Kirsten, Nielsen, Susan, Nuruzzaman, Farzana, Uziel, Yosef, Helmus, Nicola, and Torok, Kathryn S.

Published
2022
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13. The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET

Author

Talarico, Rosaria, Aguilera, Silvia, Alexander, Tobias, Amoura, Zahir, Antunes, Ana M., Arnaud, Laurent, Avcin, Tadej, Beretta, Lorenzo, Bombardieri, Stefano, Burmester, Gerd R., Cannizzo, Sara, Cavagna, Lorenzo, Chaigne, Benjamin, Cornet, Alain, Costedoat-Chalumeau, Nathalie, Doria, Andrea, Ferraris, Alessandro, Fischer-Betz, Rebecca, Fonseca, João E., Frank, Charissa, Gaglioti, Andrea, Galetti, Ilaria, Grunert, Jürgen, Guimarães, Vera, Hachulla, Eric, Houssiau, Frederic, Iaccarino, Luca, Krieg, Thomas, Limper, Marteen, Malfait, Fransiska, Mariette, Xavier, Marinello, Diana, Martin, Thierry, Matthews, Lisa, Matucci-Cerinic, Marco, Meyer, Alain, Montecucco, Carlomaurizio, Mouthon, Luc, Müller-Ladner, Ulf, Rednic, Simona, Romão, Vasco C., Schneider, Matthias, Smith, Vanessa, Sulli, Alberto, Tamirou, Farah, Taruscio, Domenica, Taulaigo, Anna V., Terol, Enrique, Tincani, Angela, Ticciati, Simone, Turchetti, Giuseppe, van Hagen, P. Martin, van Laar, Jacob M., Vieira, Ana, de Vries-Bouwstra, Jeska K., Cutolo, Maurizio, and Mosca, Marta

Published
2021
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14. Publisher Correction: The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET

Author

Talarico, Rosaria, Aguilera, Silvia, Alexander, Tobias, Amoura, Zahir, Antunes, Ana M., Arnaud, Laurent, Avcin, Tadej, Beretta, Lorenzo, Bombardieri, Stefano, Burmester, Gerd R., Cannizzo, Sara, Cavagna, Lorenzo, Chaigne, Benjamin, Cornet, Alain, Costedoat-Chalumeau, Nathalie, Doria, Andrea, Ferraris, Alessandro, Fischer-Betz, Rebecca, Fonseca, João E., Frank, Charissa, Gaglioti, Andrea, Galetti, Ilaria, Grunert, Jürgen, Guimarães, Vera, Hachulla, Eric, Houssiau, Frederic, Iaccarino, Luca, Krieg, Thomas, Limper, Marteen, Malfait, Fransiska, Mariette, Xavier, Marinello, Diana, Martin, Thierry, Matthews, Lisa, Matucci-Cerinic, Marco, Meyer, Alain, Montecucco, Carlomaurizio, Mouthon, Luc, Müller-Ladner, Ulf, Rednic, Simona, Romão, Vasco C., Schneider, Matthias, Smith, Vanessa, Sulli, Alberto, Tamirou, Farah, Taruscio, Domenica, Taulaigo, Anna V., Terol, Enrique, Tincani, Angela, Ticciati, Simone, Turchetti, Giuseppe, van Hagen, P. Martin, van Laar, Jacob M., Vieira, Ana, de Vries-Bouwstra, Jeska K., Cutolo, Maurizio, and Mosca, Marta

Published
2022
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16. Development of a New International Antiphospholipid Syndrome Classification Criteria Phase I/II Report: Generation and Reduction of Candidate Criteria

Author

Barbhaiya, Medha, Zuily, Stephane, Ahmadzadeh, Yasaman, Amigo, Mary‐Carmen, Avcin, Tadej, Bertolaccini, Maria Laura, Branch, D. Ware, de Jesus, Guilherme, Devreese, Katrien M. J., Frances, Camille, Garcia, David, Guillemin, Francis, Levine, Steven R., Levy, Roger A., Lockshin, Michael D., Ortel, Thomas L., Seshan, Surya V., Tektonidou, Maria, Wahl, Denis, Willis, Rohan, Naden, Ray, Costenbader, Karen, Erkan, Doruk, Agmon‐Levin, Nancy, Aguilar, Cassyanne, Alba, Paula, Alpan, Oral, Ambrozic, Ales, Amoura, Zahir, Andrade, Danieli, Andrade, Luis, Appenzeller, Simone, Esen, Bahar Artim, Atsumi, Tatsuya, Berkun, Yackov, Cabral, Antonio, Canaud, Guillaume, Cervera, Ricard, Chen, Pojen, Chighizola, Cecilia, Cimaz, Rolando, Cohen, Hannah, Costedoat‐Chalumeau, Nathalie, Crowther, Mark, Cuadrado, Maria Jose, de Groot, Philip G., de Moerloose, Philippe, Derksen, Ronald, Diz‐Kucukkaya, Reyhan, Dörner, Thomas, Fortin, Paul, Giannakopoulos, Bill, Gómez‐Puerta, Jose A., Gonzalez, Emilio B., Inanc, Murat, Kenet, Gili, Khamashta, Munther, Kriegel, Martin, Krilis, Steven, Laskin, Carl, Massicotte, Patti, McCarty, Gale, Meroni, Pier Luigi, Mikdashi, Jamal, Myones, Barry, Pengo, Vittorio, Petri, Michelle, Roubey, Robert, Sammaritano, Lisa, Sanna, Giovanni, Sciascia, Savino, Signorelli, Flavio, Soybilgic, Arzu, Tincani, Angela, Woller, Scott, and Yelnik, Cécile

Published
2021
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17. Global comment on the use of hydroxychloroquine during the periconception period and pregnancy in women with autoimmune diseases

Author

Schreiber, Karen, primary, Giles, Ian, additional, Costedoat-Chalumeau, Nathalie, additional, Nelson-Piercy, Catherine, additional, Dolhain, Radboud JEM, additional, Mosca, Marta, additional, Förger, Frauke, additional, Fischer-Betz, Rebecca, additional, Molto, Anna, additional, Tincani, Angela, additional, Pasquier, Elisabeth, additional, Marin, Benoit, additional, Elefant, Elisabeth, additional, Salmon, Jane, additional, Bermas, Bonnie L, additional, Sammaritano, Lisa, additional, Clowse, Megan E B, additional, Chambers, Christina, additional, Buyon, Jill, additional, Inoue, Saori Abe, additional, Agmon-Levin, Nancy, additional, Aguilera, Silvia, additional, Emadi, Samar Al, additional, Andersen, Jeanette, additional, Andrade, Danieli, additional, Antovic, Aleksandra, additional, Arnaud, Laurent, additional, Christiansen, Alice Ashouri, additional, Avcin, Tadej, additional, Badreh-Wirström, Sara, additional, Bertsias, George, additional, Bini, Ilaria, additional, Bobirca, Anca, additional, Branch, Ware, additional, Brucato, Antonio, additional, Bultink, Irene, additional, Capela, Susanna, additional, Cecchi, Irene, additional, Cervera, Ricard, additional, Chighizola, Cecilia, additional, Cobilinschi, Claudia, additional, Cuadrado, Maria Jose, additional, Dey, Dzifa, additional, Etomi, Oseme, additional, Espinosa, Gerard, additional, Flint, Julia, additional, Fonseca, João-Eurico, additional, Fritsch-Stork, Ruth, additional, Gerosa, Maria, additional, Glintborg, Bente, additional, Skorpen, Carina Gøtestam, additional, Goulden, Bethan, additional, Graversgaard, Christine, additional, Gunnarsson, Iva, additional, Gupta, Latika, additional, Hetland, Merete, additional, Hodson, Ken, additional, Hunt, Beverley J, additional, Isenberg, David, additional, Jacobsen, Søren, additional, Khamashta, Munther, additional, Levy, Roger, additional, Linde, Louise, additional, Lykke, Jacob, additional, Meissner, Yvette, additional, Moore, Louise, additional, Morand, Eric, additional, Navarra, Sandra, additional, Opris-Belinski, Daniela, additional, Østensen, Monika, additional, Ozawa, Hiroki, additional, Perez-Garcia, Luis Fernando, additional, Petri, Michelle, additional, Pons-Estel, Guillermo J, additional, Radin, Massimo, additional, Raio, Luigi, additional, Rottenstreich, Amihai, additional, Ruiz-Irastorza, Guillermo, additional, Tunjić, Slađana Rumpl, additional, Rygg, Marite, additional, Sciascia, Savino, additional, Strangfeld, Anja, additional, Svenungsson, Elisabet, additional, Tektonidou, Maria, additional, Troldborg, Anne, additional, Vinet, Evelyne, additional, Vojinovic, Jelena, additional, Voss, Anne, additional, Wallenius, Marianne, additional, and Andreoli, Laura, additional

Published
2023
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20. 2023 ACR/EULAR antiphospholipid syndrome classification criteria

Author

Barbhaiya, Medha, primary, Zuily, Stephane, additional, Naden, Ray, additional, Hendry, Alison, additional, Manneville, Florian, additional, Amigo, Mary-Carmen, additional, Amoura, Zahir, additional, Andrade, Danieli, additional, Andreoli, Laura, additional, Artim-Esen, Bahar, additional, Atsumi, Tatsuya, additional, Avcin, Tadej, additional, Belmont, Michael H, additional, Bertolaccini, Maria Laura, additional, Branch, D Ware, additional, Carvalheiras, Graziela, additional, Casini, Alessandro, additional, Cervera, Ricard, additional, Cohen, Hannah, additional, Costedoat-Chalumeau, Nathalie, additional, Crowther, Mark, additional, de Jesús, Guilherme, additional, Delluc, Aurelien, additional, Desai, Sheetal, additional, Sancho, Maria De, additional, Devreese, Katrien M, additional, Diz-Kucukkaya, Reyhan, additional, Duarte-García, Ali, additional, Frances, Camille, additional, Garcia, David, additional, Gris, Jean-Christophe, additional, Jordan, Natasha, additional, Leaf, Rebecca K, additional, Kello, Nina, additional, Knight, Jason S, additional, Laskin, Carl, additional, Lee, Alfred I, additional, Legault, Kimberly, additional, Levine, Steve R, additional, Levy, Roger A, additional, Limper, Maarten, additional, Lockshin, Michael D, additional, Mayer-Pickel, Karoline, additional, Musial, Jack, additional, Meroni, Pier Luigi, additional, Orsolini, Giovanni, additional, Ortel, Thomas L, additional, Pengo, Vittorio, additional, Petri, Michelle, additional, Pons-Estel, Guillermo, additional, Gomez-Puerta, Jose A, additional, Raimboug, Quentin, additional, Roubey, Robert, additional, Sanna, Giovanni, additional, Seshan, Surya V, additional, Sciascia, Savino, additional, Tektonidou, Maria G, additional, Tincani, Angela, additional, Wahl, Denis, additional, Willis, Rohan, additional, Yelnik, Cécile, additional, Zuily, Catherine, additional, Guillemin, Francis, additional, Costenbader, Karen, additional, and Erkan, Doruk, additional

Published
2023
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21. Development and Initial Validation of the Macrophage Activation Syndrome/Primary Hemophagocytic Lymphohistiocytosis Score, a Diagnostic Tool that Differentiates Primary Hemophagocytic Lymphohistiocytosis from Macrophage Activation Syndrome

Author

Abinun, Mario, Aggarwal, Amita, Akikusa, Jonathan, Al-Mayouf, Sulaiman, Alessio, Maria, Anton, Jordi, Apaz, Maria Teresa, Astigarraga, Itziar, Avcin, Tadej, Ayaz, Nuray Aktay, Barone, Patrizia, Bica, Bianca, Bolt, Isabel, Bovis, Francesca, Breda, Luciana, Chasnyk, Vyacheslav, Cimaz, Rolando, Corona, Fabrizia, Cron, Randy Q., Cuttica, Ruben, Davì, Sergio, Davidsone, Zane, De Cunto, Carmen, De Inocencio, Jaime, Demirkaya, Erkan, Eisenstein, Eli M., Enciso, Sandra, Espada, Graciela, Fischbach, Michel, Frosch, Michael, Gallizzi, Romina, Gamir, Maria Luz, Gao, Yi-Jin, Griffin, Thomas, Grom, Alexei, Hashad, Soad, Hennon, Teresa, Henter, Jan-Inge, Horne, AnnaCarin, Horneff, Gerd, Huasong, Zeng, Huber, Adam, Ilowite, Norman, Insalaco, Antonella, Ioseliani, Maka, Jeng, Michael, Kapović, Agneza Marija, Kasapcopur, Ozgur, Khubchandani, Raju, Kitoh, Toshiyuki, Koné-Paut, Isabelle, de Oliveira, Sheila Knupp Feitosa, Lattanzi, Bianca, Lehmberg, Kai, Lepore, Loredana, Li, Caifeng, Lipton, Jeffrey M., Magni-Manzoni, Silvia, Maritsi, Despoina, Martini, Alberto, McCurdy, Deborah, Merino, Rosa, Micalizzi, Concetta, Miettunen, Paivi, Minoia, Francesca, Mulaosmanovic, Velma, Nichols, Kim E., Nielsen, Susan, Ozen, Seza, Pal, Priyankar, Prahalad, Sampath, Ravelli, Angelo, Rigante, Donato, Rumba-Rozenfelde, Ingrida, Ruperto, Nicolino, Russo, Ricardo, Magalhães, Claudia Saad, Sanner, Helga, Sewairi, Wafaa Mohamed Saad, Shenoi, Susan, Artur Silva, Clovis, Stanevicha, Valda, Sterba, Gary, Stine, Kimo C., Susic, Gordana, Sztajnbok, Flavio, Takei, Syuji, Trauzeddel, Ralf, Tsitsami, Elena, Unsal, Erbil, Uziel, Yosef, Vougiouka, Olga, Wallace, Carol A., Weaver, Lehn, E. Weiss, Jennifer, Weitzman, Sheila, Wouters, Carine, Wulffraat, Nico, Zletni, Mabruka, Arico, Maurizio, Egeler, R. Maarten, Filipovich, Alexandra H., Gadner, Helmut, Imashuku, Shinsaku, Janka, Gritta, Ladisch, Stephan, McClain, Ken L., and Webb, David

Published
2017
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23. Ten-year safety and clinical benefit from open-label etanercept treatment in children and young adults with juvenile idiopathic arthritis.

Author

Vojinović, Jelena, Foeldvari, Ivan, Dehoorne, Joke, Panaviene, Violeta, Susic, Gordana, Horneff, Gerd, Stanevicha, Valda, Kobusinska, Katarzyna, Zuber, Zbigniew, Dobrzyniecka, Bogna, Akikusa, Jonathan, Avcin, Tadej, Borlenghi, Cecilia, Arthur, Edmund, Tatulych, Svitlana Y, Zang, Chuanbo, Tsekouras, Vassilis, Vlahos, Bonnie, Martini, Alberto, and Ruperto, Nicolino

Subjects
DRUG efficacy, HODGKIN'S disease, CLINICAL trials, ANTI-inflammatory agents, JUVENILE idiopathic arthritis, ANTIRHEUMATIC agents, INFECTION, DESCRIPTIVE statistics, RESEARCH funding, DRUG side effects, PATIENT safety, DISEASE remission, EVALUATION, CHILDREN, ADOLESCENCE
Abstract

Objectives CLIPPER2 was an 8-year, open-label extension of the phase 3b, 2-year CLIPPER study on the safety and efficacy of etanercept in patients with JIA, categorized as extended oligoarticular arthritis (eoJIA), enthesitis-related arthritis (ERA) or PsA. Methods Participants with eoJIA (2–17 years old), ERA or PsA (each 12–17 years old) who received ≥1 etanercept dose (0.8 mg/kg weekly; maximum 50 mg) in CLIPPER could enter CLIPPER2. Primary end point was occurrence of malignancy. Efficacy assessments included proportions achieving JIA ACR 30/50/70/90/100 criteria and ACR inactive disease criteria, and clinical remission (ACR criteria) or Juvenile Arthritis DAS (JADAS) ≤1. Results Overall, 109/127 (86%) CLIPPER participants entered CLIPPER2 [ n  = 55 eoJIA, n  = 31 ERA, n  = 23 PsA; 99 (78%) on active treatment]; 84 (66%) completed 120 months' follow-up [32 (25%) on active treatment]. One malignancy (Hodgkin's disease in 18-year-old patient with eoJIA treated with methotrexate for 8 years) was reported; there were no cases of active tuberculosis or deaths. Numbers and incidence rates (events per 100 patient-years) of TEAEs (excluding infections/ISRs) decreased from 193 (173.81) in Year 1 to 9 (27.15) in Year 10; TE infections and serious infections also decreased. Over 45% of participants (n  = 127) achieved JIA ACR50 responses from Month 2 onwards; 42 (33%) and 34 (27%) participants achieved JADAS and ACR clinical remission, respectively. Conclusions Etanercept treatment up to 10 years was well tolerated, consistent with the known safety profile, with durable response in the participants still on active treatment. The benefit–risk assessment of etanercept in these JIA categories remains favourable. Trial registration ClinicalTrials.gov IDs: CLIPPER (NCT00962741); CLIPPER2 (NCT01421069) [ABSTRACT FROM AUTHOR]

Published
2024
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27. Points to consider: EULAR–UEMS standards for the training of European rheumatologists

Author

Alunno, Alessia, primary, Avcin, Tadej, additional, Haines, Catherine, additional, Ramiro, Sofia, additional, Sivera, Francisca, additional, Badreh, Sara, additional, Baraliakos, Xenofon, additional, Bijlsma, Johannes W J, additional, Buttgereit, Frank, additional, Chaudhuri, Kaushik, additional, Da Silva, Jose A P, additional, Dudler, Jean, additional, Ferreira, Ricardo J O, additional, Gudu, Tania, additional, Hachulla, Eric, additional, Holland-Fischer, Mette, additional, Iagnocco, Annamaria, additional, Kragstrup, Tue Wenzel, additional, Nagy, György, additional, Romão, Vasco C, additional, Stones, Simon R, additional, van Onna, Marloes, additional, and Edwards, Christopher J, additional

Published
2023
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28. Application and performance of disease activity indices proposed for patients with systemic sclerosis in an international cohort of patients with juvenile systemic sclerosis

Author

Klotsche, Jens, primary, Torok, Kathryn S, additional, Kasapcopur, Ozgur, additional, Adrovic, Amra, additional, Terreri, Maria Teresa, additional, Sakamoto, Ana Paula, additional, Katsicas, Maria, additional, Sztajnbok, Flavio, additional, Marrani, Edoardo, additional, Sifuentes-Giraldo, Alberto, additional, Stanevicha, Valda, additional, Anton, Jordi, additional, Feldmann, Brian, additional, Kostik, Mikhail, additional, Nemcova, Dana, additional, Santos, Maria Jose, additional, Appenzeller, Simone, additional, Avcin, Tadej, additional, Battagliotti, Cristina, additional, Berntson, Lillemor, additional, Bica, Blanca, additional, Brunner, Jürgen, additional, Eleftheriou, Despina, additional, Harel, Liora, additional, Horneff, Gerd, additional, Kallinich, Tilmann, additional, Minden, Kirsten, additional, Nielsen, Susan, additional, Patwardhan, Anjali, additional, Helmus, Nicola, additional, and Foeldvari, Ivan, additional

Published
2023
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29. OA39 Development of a Childhood Lupus Low Disease Activity State definition: recommendations from the International Childhood Lupus Treat-to-Target Task Force

Author

Smith, Eve M D, primary, Aggarwal, Amita, additional, Ainsworth, Jenny, additional, Al-Abadi, Eslam, additional, Avcin, Tadej, additional, Bortey, Lynette, additional, Burnham, Jon, additional, Ciurtin, Coziana, additional, Hedrich, Christian M, additional, Kamphuis, Sylvia, additional, Levy, Deborah, additional, Lewandowski, Laura, additional, Maxwell, Naomi, additional, Morand, Eric, additional, Ozen, Seza, additional, Pain, Clare, additional, Ravelli, Angelo, additional, Saad Magalhaes, Claudia, additional, Pilkington, Clarissa, additional, Schonenberg, Dieneke, additional, Scott, Chris, additional, Tullus, Kjell, additional, and Beresford, Michael W, additional

Published
2023
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30. ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products

Author

Talarico, Rosaria, primary, Ramirez, Giuseppe Alvise, additional, Barreira, Sofia C., additional, Cardamone, Chiara, additional, Triggianese, Paola, additional, Aguilera, Silvia, additional, Andersen, Jeanette, additional, Avcin, Tadej, additional, Benistan, Karelle, additional, Bertsias, George, additional, Bortoluzzi, Alessandra, additional, Bouillot, Coralie, additional, Bulina, Inita, additional, Burmester, Gerd R., additional, Callens, Steven, additional, Carreira, Patricia E., additional, Cervera, Ricard, additional, Cutolo, Maurizio, additional, Damian, Laura, additional, Della-Torre, Emanuel, additional, Faria, Raquel, additional, Fonseca, João E., additional, Galetti, Ilaria, additional, Hachulla, Eric, additional, Iaccarino, Luca, additional, Jacobsen, Søren, additional, Khmelinskii, Nikita, additional, Limper, Maarten, additional, Marinello, Diana, additional, Meyer, Alain, additional, Moroncini, Gianluca, additional, Nagy, Gyorgy, additional, Olesinska, Marzena, additional, Pamfil, Cristina, additional, Pileckyte, Margarita, additional, Pistello, Mauro, additional, Rednic, Simona, additional, Richez, Christophe, additional, Romão, Vasco C., additional, Schneider, Matthias, additional, Sciascia, Savino, additional, Scirè, Carlo Alberto, additional, Simonini, Gabriele, additional, Smith, Vanessa, additional, Sulli, Alberto, additional, Tani, Chiara, additional, Tas, Sander W., additional, Tincani, Angela, additional, Vonk, Madelon C., additional, Tektonidou, Maria, additional, and Mosca, Marta, additional

Published
2023
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31. Application and performance of disease activity indices proposed for patients with systemic sclerosis in an international cohort of patients with juvenile systemic sclerosis

Author

Klotsche, Jens, Torok, Kathryn S., Kasapcopur, Ozgur, Adrovic, Amra, Terreri, Maria Teresa, Sakamoto, Ana Paula, Katsicas, Maria, Sztajnbok, Flavio, Marrani, Edoardo, Sifuentes-Giraldo, Alberto, Stanevicha, Valda, Anton, Jordi, Feldmann, Brian, Kostik, Mikhail, Nemcova, Dana, Santos, Maria Jose, Appenzeller, Simone, Avcin, Tadej, Battagliotti, Cristina, Berntson, Lillemor, Bica, Blanca, Brunner, Juergen, Eleftheriou, Despina, Harel, Liora, Horneff, Gerd, Kallinich, Tilmann, Minden, Kirsten, Nielsen, Susan, Patwardhan, Anjali, Helmus, Nicola, Foeldvari, Ivan, Klotsche, Jens, Torok, Kathryn S., Kasapcopur, Ozgur, Adrovic, Amra, Terreri, Maria Teresa, Sakamoto, Ana Paula, Katsicas, Maria, Sztajnbok, Flavio, Marrani, Edoardo, Sifuentes-Giraldo, Alberto, Stanevicha, Valda, Anton, Jordi, Feldmann, Brian, Kostik, Mikhail, Nemcova, Dana, Santos, Maria Jose, Appenzeller, Simone, Avcin, Tadej, Battagliotti, Cristina, Berntson, Lillemor, Bica, Blanca, Brunner, Juergen, Eleftheriou, Despina, Harel, Liora, Horneff, Gerd, Kallinich, Tilmann, Minden, Kirsten, Nielsen, Susan, Patwardhan, Anjali, Helmus, Nicola, and Foeldvari, Ivan

Abstract

Objectives: Juvenile systemic sclerosis is a rare childhood disease. Three disease activity indices have been published for adult patients with systemic sclerosis: the European Scleroderma Study Group Index, a modified version of the European Scleroderma Study Group Index and the revised European Scleroderma Trials and Research index. The objective of this study was to determine the feasibility and performance of the three disease activity indices in a prospectively followed cohort of patients with juvenile systemic sclerosis.Methods: The analysis cohort was selected from the prospective international inception cohort enrolling juvenile systemic sclerosis patients. The correlation of the disease activity indices with the physicians' and the patients' global assessment of disease activity was determined. The disease activity indices were compared between patients with active and inactive disease. Sensitivity to change between 6- and 12-month follow-up was investigated by mixed models.Results: Eighty percent of the 70 patients had a diffuse cutaneous subtype. The revised European Scleroderma Trials and Research index was highly correlated with the physician-reported global disease activity/parents-reported global disease activity (r = 0.74/0.64), followed by the European Scleroderma Study Group activity index (r = 0.61/0.55) and the modified version of the European Scleroderma Study Group activity index (r = 0.51/0.43). The disease activity indices significantly differed between active and inactive patients. The disease activity indices showed sensitivity to change between 6- and 12-month follow-up among patients who improved or worsened according to the physician-reported global disease activity and the parents-reported global disease activity.Conclusion: Overall, no disease activity score is superior to the other, and all three scores have limitations in the application in juvenile systemic sclerosis patients. Furthermore, research on the concept of disease activity

Published
2023
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32. Gender differences in juvenile systemic sclerosis patients : Results from the international juvenile scleroderma inception cohort

Author

Foeldvari, Ivan, Klotsche, Jens, Kasapcopur, Ozgur, Adrovic, Amra, Terreri, Maria Teresa, Sakamoto, Ana Paula, Stanevicha, Valda, Anton, Jordi, Feldman, Brian M., Sztajnbok, Flavio, Khubchandani, Raju, Alexeeva, Ekaterina, Katsicas, Maria, Sawhney, Sujata, Smith, Vanessa, Appenzeller, Simone, Avcin, Tadej, Kostik, Mikhail, Lehman, Thomas, Marrani, Edoardo, Schonenberg-Meinema, Dieneke, Sifuentes-Giraldo, Walter-Alberto, Vasquez-Canizares, Natalia, Janarthanan, Mahesh, Moll, Monika, Nemcova, Dana, Patwardhan, Anjali, Santos, Maria Jose, Battagliotti, Cristina, Berntson, Lillemor, Bica, Blanca, Brunner, Jürgen, Cimaz, Rolando, Costa-Reis, Patricia, Eleftheriou, Despina, Harel, Liora, Horneff, Gerd, Johnson, Sindhu R., Kaiser, Daniela, Kallinich, Tilmann, Lazarevic, Dragana, Minden, Kirsten, Nielsen, Susan, Nuruzzaman, Farzana, Opsahl Hetlevik, Siri, Uziel, Yosef, Helmus, Nicola, Torok, Kathryn S., Foeldvari, Ivan, Klotsche, Jens, Kasapcopur, Ozgur, Adrovic, Amra, Terreri, Maria Teresa, Sakamoto, Ana Paula, Stanevicha, Valda, Anton, Jordi, Feldman, Brian M., Sztajnbok, Flavio, Khubchandani, Raju, Alexeeva, Ekaterina, Katsicas, Maria, Sawhney, Sujata, Smith, Vanessa, Appenzeller, Simone, Avcin, Tadej, Kostik, Mikhail, Lehman, Thomas, Marrani, Edoardo, Schonenberg-Meinema, Dieneke, Sifuentes-Giraldo, Walter-Alberto, Vasquez-Canizares, Natalia, Janarthanan, Mahesh, Moll, Monika, Nemcova, Dana, Patwardhan, Anjali, Santos, Maria Jose, Battagliotti, Cristina, Berntson, Lillemor, Bica, Blanca, Brunner, Jürgen, Cimaz, Rolando, Costa-Reis, Patricia, Eleftheriou, Despina, Harel, Liora, Horneff, Gerd, Johnson, Sindhu R., Kaiser, Daniela, Kallinich, Tilmann, Lazarevic, Dragana, Minden, Kirsten, Nielsen, Susan, Nuruzzaman, Farzana, Opsahl Hetlevik, Siri, Uziel, Yosef, Helmus, Nicola, and Torok, Kathryn S.

Abstract

Objective: To compare organ involvement and disease severity between male and female patients with juvenile onset systemic sclerosis. Methods: Demographics, organ involvement, laboratory evaluation, patient-reported outcomes and physician assessment variables were compared between male and female juvenile onset systemic sclerosis patients enrolled in the prospective international juvenile systemic sclerosis cohort at their baseline visit and after 12 months. Results: One hundred and seventy-five juvenile onset systemic sclerosis patients were evaluated, 142 females and 33 males. Race, age of onset, disease duration, and disease subtypes (70% diffuse cutaneous) were similar between males and females. Active digital ulceration, very low body mass index, and tendon friction rubs were significantly more frequent in males. Physician global assessment of disease severity and digital ulcer activity was significantly higher in males. Composite pulmonary involvement was also more frequent in males, though not statistically significantly. After 12 months, they are the pattern of differences changed female patients had significantly more frequent pulmonary involvement. Conclusion: In this cohort, juvenile onset systemic sclerosis had a more severe course in males at baseline and but the pattern changed after 12 months. Some differences from adult findings persisted, there is no increased signal of pulmonary arterial hypertension or heart failure in male pediatric patients. While monitoring protocols of organ involvement in juvenile onset systemic sclerosis need to be identical for males and females.

Published
2023
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33. Towards development of treat to target (T2T) in childhood-onset systemic lupus erythematosus:PReS-endorsed overarching principles and points-to-consider from an international task force

Author

Smith, Eve Mary Dorothy, Aggarwal, Amita, Ainsworth, Jenny, Al-Abadi, Eslam, Avcin, Tadej, Bortey, Lynette, Burnham, Jon, Ciurtin, Coziana, Hedrich, Christian M., Kamphuis, Sylvia, Levy, Deborah M., Lewandowski, Laura B., Maxwell, Naomi, Morand, Eric F., Ozen, Seza, Pain, Clare E., Ravelli, Angelo, Saad Magalhaes, Claudia, Pilkington, Clarissa A., Schonenberg-Meinema, Dieneke, Scott, Christiaan, Tullus, Kjell, Beresford, Michael William, Smith, Eve Mary Dorothy, Aggarwal, Amita, Ainsworth, Jenny, Al-Abadi, Eslam, Avcin, Tadej, Bortey, Lynette, Burnham, Jon, Ciurtin, Coziana, Hedrich, Christian M., Kamphuis, Sylvia, Levy, Deborah M., Lewandowski, Laura B., Maxwell, Naomi, Morand, Eric F., Ozen, Seza, Pain, Clare E., Ravelli, Angelo, Saad Magalhaes, Claudia, Pilkington, Clarissa A., Schonenberg-Meinema, Dieneke, Scott, Christiaan, Tullus, Kjell, and Beresford, Michael William

Abstract

Objectives Application of 'treat-to-target' (T2T) in childhood-onset systemic lupus erythematosus (cSLE) may improve care and health outcomes. This initiative aimed to harmonise existing evidence and expert opinion regarding T2T for cSLE. Methods An international T2T Task Force was formed of specialists in paediatric rheumatology, paediatric nephrology, adult rheumatology, patient and parent representatives. A steering committee formulated a set of draft overarching principles and points-to-consider, based on evidence from systematic literature review. Two on-line preconsensus meeting Delphi surveys explored healthcare professionals' views on these provisional overarching principles and points-to-consider. A virtual consensus meeting employed a modified nominal group technique to discuss, modify and vote on each overarching principle/point-to-consider. Agreement of >80% of Task Force members was considered consensus. Results The Task Force agreed on four overarching principles and fourteen points-to-consider. It was agreed that both treatment targets and therapeutic strategies should be subject to shared decision making with the patient/caregivers, with full remission the preferred target, and low disease activity acceptable where remission cannot be achieved. Important elements of the points-to-consider included: aiming for prevention of flare and organ damage; glucocorticoid sparing; proactively addressing factors that impact health-related quality of life (fatigue, pain, mental health, educational challenges, medication side effects); and aiming for maintenance of the target over the long-term. An extensive research agenda was also formulated. Conclusions These international, consensus agreed overarching principles and points-to-consider for T2T in cSLE lay the foundation for future T2T approaches in cSLE, endorsed by the Paediatric Rheumatology European Society.

Published
2023

34. Global comment on the use of hydroxychloroquine during the periconception period and pregnancy in women with autoimmune diseases

Author

Schreiber, Karen, Giles, Ian, Costedoat-Chalumeau, Nathalie, Nelson-Piercy, Catherine, Dolhain, Radboud Jem, Mosca, Marta, Förger, Frauke, Fischer-Betz, Rebecca, Molto, Anna, Tincani, Angela, Pasquier, Elisabeth, Marin, Benoit, Elefant, Elisabeth, Salmon, Jane, Bermas, Bonnie L, Sammaritano, Lisa, Clowse, Megan E B, Chambers, Christina, Buyon, Jill, Inoue, Saori Abe, Agmon-Levin, Nancy, Aguilera, Silvia, Emadi, Samar Al, Andersen, Jeanette, Andrade, Danieli, Antovic, Aleksandra, Arnaud, Laurent, Christiansen, Alice Ashouri, Avcin, Tadej, Badreh-Wirström, Sara, Bertsias, George, Bini, Ilaria, Bobirca, Anca, Branch, Ware, Brucato, Antonio, Bultink, Irene, Capela, Susanna, Cecchi, Irene, Cervera, Ricard, Chighizola, Cecilia, Cobilinschi, Claudia, Cuadrado, Maria Jose, Dey, Dzifa, Etomi, Oseme, Espinosa, Gerard, Flint, Julia, Fonseca, João-Eurico, Fritsch-Stork, Ruth, Gerosa, Maria, Glintborg, Bente, Skorpen, Carina Gøtestam, Goulden, Bethan, Graversgaard, Christine, Gunnarsson, Iva, Gupta, Latika, Hetland, Merete, Hodson, Ken, Hunt, Beverley J, Isenberg, David, Jacobsen, Søren, Khamashta, Munther, Levy, Roger, Linde, Louise, Lykke, Jacob, Meissner, Yvette, Moore, Louise, Morand, Eric, Navarra, Sandra, Opris-Belinski, Daniela, Østensen, Monika, Ozawa, Hiroki, Perez-Garcia, Luis Fernando, Petri, Michelle, Pons-Estel, Guillermo J, Radin, Massimo, Raio, Luigi, Rottenstreich, Amihai, Ruiz-Irastorza, Guillermo, Tunjić, Slađana Rumpl, Rygg, Marite, Sciascia, Savino, Strangfeld, Anja, Svenungsson, Elisabet, Tektonidou, Maria, Troldborg, Anne, Vinet, Evelyne, Vojinovic, Jelena, Voss, Anne, Wallenius, Marianne, Andreoli, Laura, Schreiber, Karen, Giles, Ian, Costedoat-Chalumeau, Nathalie, Nelson-Piercy, Catherine, Dolhain, Radboud Jem, Mosca, Marta, Förger, Frauke, Fischer-Betz, Rebecca, Molto, Anna, Tincani, Angela, Pasquier, Elisabeth, Marin, Benoit, Elefant, Elisabeth, Salmon, Jane, Bermas, Bonnie L, Sammaritano, Lisa, Clowse, Megan E B, Chambers, Christina, Buyon, Jill, Inoue, Saori Abe, Agmon-Levin, Nancy, Aguilera, Silvia, Emadi, Samar Al, Andersen, Jeanette, Andrade, Danieli, Antovic, Aleksandra, Arnaud, Laurent, Christiansen, Alice Ashouri, Avcin, Tadej, Badreh-Wirström, Sara, Bertsias, George, Bini, Ilaria, Bobirca, Anca, Branch, Ware, Brucato, Antonio, Bultink, Irene, Capela, Susanna, Cecchi, Irene, Cervera, Ricard, Chighizola, Cecilia, Cobilinschi, Claudia, Cuadrado, Maria Jose, Dey, Dzifa, Etomi, Oseme, Espinosa, Gerard, Flint, Julia, Fonseca, João-Eurico, Fritsch-Stork, Ruth, Gerosa, Maria, Glintborg, Bente, Skorpen, Carina Gøtestam, Goulden, Bethan, Graversgaard, Christine, Gunnarsson, Iva, Gupta, Latika, Hetland, Merete, Hodson, Ken, Hunt, Beverley J, Isenberg, David, Jacobsen, Søren, Khamashta, Munther, Levy, Roger, Linde, Louise, Lykke, Jacob, Meissner, Yvette, Moore, Louise, Morand, Eric, Navarra, Sandra, Opris-Belinski, Daniela, Østensen, Monika, Ozawa, Hiroki, Perez-Garcia, Luis Fernando, Petri, Michelle, Pons-Estel, Guillermo J, Radin, Massimo, Raio, Luigi, Rottenstreich, Amihai, Ruiz-Irastorza, Guillermo, Tunjić, Slađana Rumpl, Rygg, Marite, Sciascia, Savino, Strangfeld, Anja, Svenungsson, Elisabet, Tektonidou, Maria, Troldborg, Anne, Vinet, Evelyne, Vojinovic, Jelena, Voss, Anne, Wallenius, Marianne, and Andreoli, Laura

Published
2023

35. 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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36. The 2023 ACR/EULAR Antiphospholipid Syndrome Classification Criteria.

Author

Barbhaiya, Medha, Zuily, Stephane, Naden, Ray, Hendry, Alison, Manneville, Florian, Amigo, Mary‐Carmen, Amoura, Zahir, Andrade, Danieli, Andreoli, Laura, Artim‐Esen, Bahar, Atsumi, Tatsuya, Avcin, Tadej, Belmont, H. Michael, Bertolaccini, Maria Laura, Branch, D. Ware, Carvalheiras, Graziela, Casini, Alessandro, Cervera, Ricard, Cohen, Hannah, and Costedoat‐Chalumeau, Nathalie

Subjects
AUTOANTIBODY analysis, CONSENSUS (Social sciences), IMMUNOGLOBULINS, ANTIPHOSPHOLIPID syndrome, DECISION making, THROMBOEMBOLISM, ENZYME-linked immunosorbent assay, HEALTH care teams, SENSITIVITY & specificity (Statistics), DELPHI method
Abstract

Objective: To develop new antiphospholipid syndrome (APS) classification criteria with high specificity for use in observational studies and trials, jointly supported by the American College of Rheumatology (ACR) and EULAR. Methods: This international multidisciplinary initiative included 4 phases: 1) Phase I, criteria generation by surveys and literature review; 2) Phase II, criteria reduction by modified Delphi and nominal group technique exercises; 3) Phase III, criteria definition, further reduction with the guidance of real‐world patient scenarios, and weighting via consensus‐based multicriteria decision analysis, and threshold identification; and 4) Phase IV, validation using independent adjudicators' consensus as the gold standard. Results: The 2023 ACR/EULAR APS classification criteria include an entry criterion of at least one positive antiphospholipid antibody (aPL) test within 3 years of identification of an aPL‐associated clinical criterion, followed by additive weighted criteria (score range 1–7 points each) clustered into 6 clinical domains (macrovascular venous thromboembolism, macrovascular arterial thrombosis, microvascular, obstetric, cardiac valve, and hematologic) and 2 laboratory domains (lupus anticoagulant functional coagulation assays, and solid‐phase enzyme‐linked immunosorbent assays for IgG/IgM anticardiolipin and/or IgG/IgM anti–β2‐glycoprotein I antibodies). Patients accumulating at least 3 points each from the clinical and laboratory domains are classified as having APS. In the validation cohort, the new APS criteria versus the 2006 revised Sapporo classification criteria had a specificity of 99% versus 86%, and a sensitivity of 84% versus 99%. Conclusion: These new ACR/EULAR APS classification criteria were developed using rigorous methodology with multidisciplinary international input. Hierarchically clustered, weighted, and risk‐stratified criteria reflect the current thinking about APS, providing high specificity and a strong foundation for future APS research. [ABSTRACT FROM AUTHOR]

Published
2023
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37. Towards development of treat to target (T2T) in childhood-onset systemic lupus erythematosus: PReS-endorsed overarching principles and points-to-consider from an international task force

Author

Smith, Eve Mary Dorothy, primary, Aggarwal, Amita, additional, Ainsworth, Jenny, additional, Al-Abadi, Eslam, additional, Avcin, Tadej, additional, Bortey, Lynette, additional, Burnham, Jon, additional, Ciurtin, Coziana, additional, Hedrich, Christian M, additional, Kamphuis, Sylvia, additional, Levy, Deborah M, additional, Lewandowski, Laura B, additional, Maxwell, Naomi, additional, Morand, Eric F, additional, Ozen, Seza, additional, Pain, Clare E, additional, Ravelli, Angelo, additional, Saad Magalhaes, Claudia, additional, Pilkington, Clarissa A, additional, Schonenberg-Meinema, Dieneke, additional, Scott, Christiaan, additional, Tullus, Kjell, additional, and Beresford, Michael William, additional

Published
2023
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39. Gender differences in juvenile systemic sclerosis patients: Results from the international juvenile scleroderma inception cohort

Author

Foeldvari, Ivan, primary, Klotsche, Jens, additional, Kasapcopur, Ozgur, additional, Adrovic, Amra, additional, Terreri, Maria Teresa, additional, Sakamoto, Ana Paula, additional, Stanevicha, Valda, additional, Anton, Jordi, additional, Feldman, Brian M, additional, Sztajnbok, Flavio, additional, Khubchandani, Raju, additional, Alexeeva, Ekaterina, additional, Katsicas, Maria, additional, Sawhney, Sujata, additional, Smith, Vanessa, additional, Appenzeller, Simone, additional, Avcin, Tadej, additional, Kostik, Mikhail, additional, Lehman, Thomas, additional, Marrani, Edoardo, additional, Schonenberg-Meinema, Dieneke, additional, Sifuentes-Giraldo, Walter-Alberto, additional, Vasquez-Canizares, Natalia, additional, Janarthanan, Mahesh, additional, Moll, Monika, additional, Nemcova, Dana, additional, Patwardhan, Anjali, additional, Santos, Maria Jose, additional, Battagliotti, Cristina, additional, Berntson, Lillemor, additional, Bica, Blanca, additional, Brunner, Jürgen, additional, Cimaz, Rolando, additional, Costa-Reis, Patricia, additional, Eleftheriou, Despina, additional, Harel, Liora, additional, Horneff, Gerd, additional, Johnson, Sindhu R, additional, Kaiser, Daniela, additional, Kallinich, Tilmann, additional, Lazarevic, Dragana, additional, Minden, Kirsten, additional, Nielsen, Susan, additional, Nuruzzaman, Farzana, additional, Opsahl Hetlevik, Siri, additional, Uziel, Yosef, additional, Helmus, Nicola, additional, and Torok, Kathryn S, additional

Published
2022
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40. Care of patients with inborn errors of immunity in thirty J Project countries between 2004 and 2021

Author

Abolhassani, Hassan, primary, Avcin, Tadej, additional, Bahceciler, Nerin, additional, Balashov, Dmitry, additional, Bata, Zsuzsanna, additional, Bataneant, Mihaela, additional, Belevtsev, Mikhail, additional, Bernatowska, Ewa, additional, Bidló, Judit, additional, Blazsó, Péter, additional, Boisson, Bertrand, additional, Bolkov, Mikhail, additional, Bondarenko, Anastasia, additional, Boyarchuk, Oksana, additional, Bundschu, Anna, additional, Casanova, Jean-Laurent, additional, Chernishova, Liudmyla, additional, Ciznar, Peter, additional, Csürke, Ildikó, additional, Erdős, Melinda, additional, Farkas, Henriette, additional, Fomina, Daria S., additional, Galal, Nermeen, additional, Goda, Vera, additional, Guner, Sukru Nail, additional, Hauser, Péter, additional, Ilyina, Natalya I., additional, Iremadze, Teona, additional, Iritsyan, Sevan, additional, Ismaili-Jaha, Vlora, additional, Jesenak, Milos, additional, Kelecic, Jadranka, additional, Keles, Sevgi, additional, Kindle, Gerhard, additional, Kondratenko, Irina V., additional, Kostyuchenko, Larysa, additional, Kovzel, Elena, additional, Kriván, Gergely, additional, Kuli-Lito, Georgina, additional, Kumánovics, Gábor, additional, Kurjane, Natalja, additional, Latysheva, Elena A., additional, Latysheva, Tatiana V., additional, Lázár, István, additional, Markelj, Gasper, additional, Markovic, Maja, additional, Maródi, László, additional, Mammadova, Vafa, additional, Medvecz, Márta, additional, Miltner, Noémi, additional, Mironska, Kristina, additional, Modell, Fred, additional, Modell, Vicki, additional, Mosdósi, Bernadett, additional, Mukhina, Anna A., additional, Murdjeva, Marianna, additional, Műzes, Györgyi, additional, Nabieva, Umida, additional, Nasrullayeva, Gulnara, additional, Naumova, Elissaveta, additional, Nagy, Kálmán, additional, Onozó, Beáta, additional, Orozbekova, Bubusaira, additional, Pac, Malgorzata, additional, Pagava, Karaman, additional, Pampura, Alexander N., additional, Pasic, Srdjan, additional, Petrosyan, Mery, additional, Petrovic, Gordana, additional, Pocek, Lidija, additional, Prodeus, Andrei P., additional, Reisli, Ismail, additional, Ress, Krista, additional, Rezaei, Nima, additional, Rodina, Yulia A., additional, Rumyantsev, Alexander G., additional, Sciuca, Svetlana, additional, Sediva, Anna, additional, Serban, Margit, additional, Sharapova, Svetlana, additional, Shcherbina, Anna, additional, Sitkauskiene, Brigita, additional, Snimshchikova, Irina, additional, Spahiu-Konjusha, Shqipe, additional, Szolnoky, Miklós, additional, Szűcs, Gabriella, additional, Toplak, Natasa, additional, Tóth, Beáta, additional, Tsyvkina, Galina, additional, Tuzankina, Irina, additional, Vlasova, Elena, additional, and Volokha, Alla, additional

Published
2022
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41. European evidence-based recommendations for the diagnosis and treatment of childhood-onset lupus nephritis: the SHARE initiative

Author

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

Published
2017
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42. Towards development of treat to target (T2T) in childhood-onset systemic lupus erythematosus: PReS-endorsed overarching principles and points-to- consider from an international task force.

Author

Dorothy Smith, Eve Mary, Aggarwal, Amita, Ainsworth, Jenny, Al-Abadi, Eslam, Avcin, Tadej, Bortey, Lynette, Burnham, Jon, Ciurtin, Coziana, Hedrich, Christian M., Kamphuis, Sylvia, Levy, Deborah M., Lewandowski, Laura B., Maxwell, Naomi, Morand, Eric F., Ozen, Seza, Pain, Clare E., Ravelli, Angelo, Magalhaes, Claudia Saad, Pilkington, Clarissa A., and Schonenberg-Meinema, Dieneke

Published
2023
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43. Gender equity in academic rheumatology, current status and potential for improvement: a cross-sectional study to inform an EULAR task force

Author

Ovseiko, Pavel V, primary, Gossec, Laure, additional, Andreoli, Laura, additional, Kiltz, Uta, additional, van Mens, Leonieke, additional, Hassan, Neelam, additional, van der Leeden, Marike, additional, Siddle, Heidi J, additional, Alunno, Alessia, additional, McInnes, Iain B, additional, Damjanov, Nemanja S, additional, Apparailly, Florence, additional, Ospelt, Caroline, additional, van der Horst-Bruinsma, Irene E, additional, Nikiphorou, Elena, additional, Druce, Katie L, additional, Szekanecz, Zoltán, additional, Sepriano, Alexandre, additional, Avcin, Tadej, additional, Bertsias, George, additional, Schett, Georg, additional, Keenan, Anne-Maree, additional, Pololi, Linda H, additional, and Coates, Laura C, additional

Published
2022
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44. Physician Global Assessment International Standardisation COnsensus in Systemic Lupus Erythematosus: the PISCOS study

Author

Piga, Matteo, primary, Chessa, Elisabetta, additional, Morand, Eric F, additional, Ugarte-Gil, Manuel F, additional, Tektonidou, Maria, additional, van Vollenhoven, Ronald, additional, Petri, Michelle, additional, Arnaud, Laurent, additional, Appenzeller, Simone, additional, Aranow, Cynthia, additional, Askanase, Anca, additional, Avcin, Tadej, additional, Bae, Sang-Cheol, additional, Bertsias, George, additional, Bonfa, Eloisa, additional, Cairoli, Ernesto, additional, Cardiel, Mario H, additional, Cervera, Ricard, additional, Chasset, François, additional, Chizzolini, Carlo, additional, Clarke, Ann E, additional, Conti, Fabrizio, additional, Costedoat-Chalumeau, Nathalie, additional, Czirják, László, additional, Doria, Andrea, additional, Dörner, Thomas, additional, Espinosa, Gerard, additional, Fischer-Betz, Rebecca, additional, Garcìa, Mercedes, additional, Gladman, Dafna D, additional, González, Luis A, additional, Gunnarsson, Iva, additional, Hamijoyo, Laniyati, additional, Hanly, John G, additional, Hasni, Sarfaraz A, additional, Houssiau, Frédéric A, additional, Inanç, Murat, additional, Inês, Luís S, additional, Isenberg, David, additional, Jacobsen, Soren, additional, Jan Wu, Yeong-Jian, additional, Kaneko, Yuko, additional, Katsumata, Yasuhiro, additional, Lau, Chak S, additional, Legge, Alexandra C, additional, Lerang, Karoline, additional, Limper, Maarten, additional, Louthrenoo, Worawit, additional, Luo, Shue-Fen, additional, Marinho, António, additional, Massardo, Loreto, additional, Mathian, Alexis, additional, Mosca, Marta, additional, Nikpour, Mandana, additional, Pego-Reigosa, José M, additional, Peschken, Christine A, additional, Pons-Estel, Bernardo A, additional, Pons-Estel, Guillermo J, additional, Rahman, Anisur, additional, Rednic, Simona, additional, Ribi, Camillo, additional, Ruiz-Irastorza, Guillermo, additional, Sato, Emilia I, additional, Saxena, Amit, additional, Schneider, Matthias, additional, Sebastiani, Gian Domenico, additional, Strand, Vibeke, additional, Svenungsson, Elisabet, additional, Tanaka, Yoshiya, additional, Tazi Mezalek, Zoubida, additional, Tee, Michael L, additional, Tincani, Angela, additional, Touma, Zahi, additional, Troldborg, Anne, additional, Vasconcelos, Carlos, additional, Vinet, Évelyne, additional, Vital, Edward M, additional, Voskuyl, Alexandre E, additional, Voss, Anne, additional, Wallace, Daniel, additional, Ward, Michael, additional, and Zamora, Leonid D, additional

Published
2022
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45. Underdetection of Interstitial Lung Disease in Juvenile Systemic Sclerosis

Author

Foeldvari, Ivan, Klotsche, Jens, Hinrichs, Bernd, Helmus, Nicola, Kasapcopur, Ozgur, Adrovic, Amra, Sztajnbok, Flavio, Terreri, Maria Teresa, Anton, Jordi, Smith, Vanessa, Katsicas, Maria, Kostik, Mikhail, Vasquez-Canizares, Natalia, Avcin, Tadej, Feldman, Brian, Janarthanan, Mahesh, Santos, Maria Jose, Sawhney, Sujata, Schonenberg-Meinema, Dieneke, Sifuentes-Giraldo, Walter-Alberto, Alexeeva, Ekaterina, Appenzeller, Simone, Battagliotti, Cristina, Berntson, Lillemor, Bica, Blanca, Costa-Reis, Patricia, Eleftheriou, Despina, Kallinich, Tilmann, Lehman, Thomas, Marrani, Edoardo, Minden, Kirsten, Nielsen, Susan, Nuruzzaman, Farzana, Patwardhan, Anjali, Khubchandani, Raju, Stanevicha, Valda, Uziel, Yosef, Torok, Kathryn S., Foeldvari, Ivan, Klotsche, Jens, Hinrichs, Bernd, Helmus, Nicola, Kasapcopur, Ozgur, Adrovic, Amra, Sztajnbok, Flavio, Terreri, Maria Teresa, Anton, Jordi, Smith, Vanessa, Katsicas, Maria, Kostik, Mikhail, Vasquez-Canizares, Natalia, Avcin, Tadej, Feldman, Brian, Janarthanan, Mahesh, Santos, Maria Jose, Sawhney, Sujata, Schonenberg-Meinema, Dieneke, Sifuentes-Giraldo, Walter-Alberto, Alexeeva, Ekaterina, Appenzeller, Simone, Battagliotti, Cristina, Berntson, Lillemor, Bica, Blanca, Costa-Reis, Patricia, Eleftheriou, Despina, Kallinich, Tilmann, Lehman, Thomas, Marrani, Edoardo, Minden, Kirsten, Nielsen, Susan, Nuruzzaman, Farzana, Patwardhan, Anjali, Khubchandani, Raju, Stanevicha, Valda, Uziel, Yosef, and Torok, Kathryn S.

Abstract

Objective. Utilizing data obtained from a prospective, international, juvenile systemic sclerosis (SSc) cohort, the present study was undertaken to determine if pulmonary screening with forced vital capacity (FVC) and diffusing capacity for carbon monoxide (DLco) is sufficient to assess the presence of interstitial lung disease (ILD) in comparison to high-resolution computed tomography (HRCT) in juvenile SSc. Methods. The juvenile SSc cohort database was queried for patients enrolled from January 2008 to January 2020 with recorded pulmonary function tests (PFTs) parameters and HRCT to determine the discriminatory properties of P FT parameters, FVC, and DLco in detecting ILD. Results. Eighty-six juvenile SSc patients had both computed tomography imaging and FVC values for direct comparison. Using findings on HRCT as the standard measure of ILD presence, the sensitivity of FVC in detecting ILD in juvenile SSc was only 40%, the specificity was 77%, and area under the curve (AUC) was 0.58. Fifty-eight juvenile SSc patients had both CT imaging and DLco values for comparison. The sensitivity of DLco in detecting ILD was 76%, the specificity was 70%, and AUC was 0.73. Conclusion. The performance of PFTs in juvenile SSc to detect underlying ILD was quite limited. Specifically, the FVC, which is one of the main clinical parameters in adult SSc to detect and monitor ILD, would miss -60% of children who had ILD changes on their accompanying HRCT. The DLco was more sensitive in detecting potential abnormalities on HRCT, but with less specificity than the FVC. These results support the use of HRCT in tandem with PFTs for the screening of ILD in juvenile SSc.

Published
2022
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46. The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET.

Author

UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, UCL - (SLuc) Service de rhumatologie, Talarico, Rosaria, Aguilera, Silvia, Alexander, Tobias, Amoura, Zahir, Andersen, Janette, Arnaud, Laurent, Avcin, Tadej, Marsal Barril, Sara, Beretta, Lorenzo, Bombardieri, Stefano, Bortoluzzi, Alessandra, Bouillot, Coralie, Bulina, Inita, Burmester, Gerd R, Cannizzo, Sara, Cavagna, Lorenzo, Chaigne, Benjamin, Cornet, Alain, Corti, Paolo, Costedoat-Chalumeau, Nathalie, Dāvidsone, Zane, Doria, Andrea, Fenech, Carol, Ferraris, Alessandro, Fischer-Betz, Rebecca, Fonseca, João Eurico, Frank, Charissa, Gaglioti, Andrea, Galetti, Ilaria, Guimarães, Vera, Hachulla, Eric, Holmner, Monica, Houssiau, Frederic, Iaccarino, Luca, Jacobsen, Søren, Limper, Maarten, Malfait, Fransiska, Mariette, Xavier, Marinello, Diana, Martin, Thierry, Matthews, Lisa, Matucci-Cerinic, Marco, Meyer, Alain, Milas-Ahić, Jasminka, Moinzadeh, Pia, Montecucco, Carlomaurizio, Mouthon, Luc, Müller-Ladner, Ulf, Nagy, György, Patarata, Eunice, Pileckyte, Margarita, Pruunsild, Chris, Rednic, Simona, Romão, Vasco C, Schneider, Matthias, Scirè, Carlo Alberto, Smith, Vanessa, Sulli, Alberto, Tamirou, Farah, Tani, Chiara, Taruscio, Domenica, Taulaigo, Anna V, Tincani, Angela, Ticciati, Simone, Turchetti, Giuseppe, van Hagen, P Martin, van Laar, Jacob M, Viera, Ana, de Vries-Bouwstra, Jeska K, Zschocke, Johannes, Cutolo, Maurizio, Mosca, Marta, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, UCL - (SLuc) Service de rhumatologie, Talarico, Rosaria, Aguilera, Silvia, Alexander, Tobias, Amoura, Zahir, Andersen, Janette, Arnaud, Laurent, Avcin, Tadej, Marsal Barril, Sara, Beretta, Lorenzo, Bombardieri, Stefano, Bortoluzzi, Alessandra, Bouillot, Coralie, Bulina, Inita, Burmester, Gerd R, Cannizzo, Sara, Cavagna, Lorenzo, Chaigne, Benjamin, Cornet, Alain, Corti, Paolo, Costedoat-Chalumeau, Nathalie, Dāvidsone, Zane, Doria, Andrea, Fenech, Carol, Ferraris, Alessandro, Fischer-Betz, Rebecca, Fonseca, João Eurico, Frank, Charissa, Gaglioti, Andrea, Galetti, Ilaria, Guimarães, Vera, Hachulla, Eric, Holmner, Monica, Houssiau, Frederic, Iaccarino, Luca, Jacobsen, Søren, Limper, Maarten, Malfait, Fransiska, Mariette, Xavier, Marinello, Diana, Martin, Thierry, Matthews, Lisa, Matucci-Cerinic, Marco, Meyer, Alain, Milas-Ahić, Jasminka, Moinzadeh, Pia, Montecucco, Carlomaurizio, Mouthon, Luc, Müller-Ladner, Ulf, Nagy, György, Patarata, Eunice, Pileckyte, Margarita, Pruunsild, Chris, Rednic, Simona, Romão, Vasco C, Schneider, Matthias, Scirè, Carlo Alberto, Smith, Vanessa, Sulli, Alberto, Tamirou, Farah, Tani, Chiara, Taruscio, Domenica, Taulaigo, Anna V, Tincani, Angela, Ticciati, Simone, Turchetti, Giuseppe, van Hagen, P Martin, van Laar, Jacob M, Viera, Ana, de Vries-Bouwstra, Jeska K, Zschocke, Johannes, Cutolo, Maurizio, and Mosca, Marta

Abstract

In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients.It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.

Published
2022

47. Physician Global Assessment International Standardisation COnsensus in Systemic Lupus Erythematosus:the PISCOS study

Author

Piga, Matteo, Chessa, Elisabetta, Morand, Eric F., Ugarte-Gil, Manuel F., Tektonidou, Maria, van Vollenhoven, Ronald, Petri, Michelle, Arnaud, Laurent, Appenzeller, Simone, Aranow, Cynthia, Askanase, Anca, Avcin, Tadej, Bae, Sang Cheol, Bertsias, George, Bonfa, Eloisa, Cairoli, Ernesto, Cardiel, Mario H., Cervera, Ricard, Chasset, François, Chizzolini, Carlo, Clarke, Ann E., Conti, Fabrizio, Costedoat-Chalumeau, Nathalie, Czirják, László, Doria, Andrea, Dörner, Thomas, Espinosa, Gerard, Fischer-Betz, Rebecca, Garcìa, Mercedes, Gladman, Dafna D., González, Luis A., Gunnarsson, Iva, Hamijoyo, Laniyati, Hanly, John G., Hasni, Sarfaraz A., Houssiau, Frédéric A., Inanç, Murat, Inês, Luís S., Isenberg, David, Jacobsen, Soren, Jan Wu, Yeong Jian, Kaneko, Yuko, Katsumata, Yasuhiro, Lau, Chak S., Legge, Alexandra C., Lerang, Karoline, Limper, Maarten, Louthrenoo, Worawit, Luo, Shue Fen, Marinho, António, Piga, Matteo, Chessa, Elisabetta, Morand, Eric F., Ugarte-Gil, Manuel F., Tektonidou, Maria, van Vollenhoven, Ronald, Petri, Michelle, Arnaud, Laurent, Appenzeller, Simone, Aranow, Cynthia, Askanase, Anca, Avcin, Tadej, Bae, Sang Cheol, Bertsias, George, Bonfa, Eloisa, Cairoli, Ernesto, Cardiel, Mario H., Cervera, Ricard, Chasset, François, Chizzolini, Carlo, Clarke, Ann E., Conti, Fabrizio, Costedoat-Chalumeau, Nathalie, Czirják, László, Doria, Andrea, Dörner, Thomas, Espinosa, Gerard, Fischer-Betz, Rebecca, Garcìa, Mercedes, Gladman, Dafna D., González, Luis A., Gunnarsson, Iva, Hamijoyo, Laniyati, Hanly, John G., Hasni, Sarfaraz A., Houssiau, Frédéric A., Inanç, Murat, Inês, Luís S., Isenberg, David, Jacobsen, Soren, Jan Wu, Yeong Jian, Kaneko, Yuko, Katsumata, Yasuhiro, Lau, Chak S., Legge, Alexandra C., Lerang, Karoline, Limper, Maarten, Louthrenoo, Worawit, Luo, Shue Fen, and Marinho, António

Abstract

The Physician Global Assessment International Standardisation COnsensus in Systemic Lupus Erythematosus (PISCOS) study aimed to obtain an evidence-based and expert-based consensus standardisation of the Physician Global Assessment (PGA) scoring of disease activity in systemic lupus erythematosus (SLE). An international panel of 79 SLE experts participated in a three-round Delphi consensus process, in which 41 statements related to the PGA in SLE were rated, using a 0 (strongly disagree) to 10 (strongly agree) numerical rating scale. Statements with agreement of 75% or greater were selected and further validated by the expert panel. Consensus was reached on 27 statements, grouped in 14 recommendations, for the use of the PGA in SLE, design of the PGA scale, practical considerations for PGA scoring, and the relationship between PGA values and levels of disease activity. Among these recommendations, the expert panel agreed that the PGA should consist of a 0–3 visual analogue scale for measuring disease activity in patients with SLE in the preceding month. The PGA is intended to rate the overall disease activity, taking into account the severity of active manifestations and clinical laboratory results, but excluding organ damage, serology, and subjective findings unrelated to disease activity. The PGA scale ranges from “no disease activity” (0) to the “most severe disease activity” (3) and incorporates the values 1 and 2 as inner markers to categorise disease activity as mild (≥0·5 to 1), moderate (>1 and ≤2) and severe (>2 to 3). Only experienced physicians can rate the PGA, and it should be preferably scored by the same rater at each visit. The PISCOS results will allow for increased homogeneity and reliability of PGA ratings in routine clinical practice, definitions of remission and low disease activity, and future SLE trials.

Published
2022

48. European evidence-based recommendations for diagnosis and treatment of childhood-onset systemic lupus erythematosus: the SHARE initiative

Author

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

Published
2017
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49. European evidence-based recommendations for diagnosis and treatment of paediatric antiphospholipid syndrome: the SHARE initiative

Author

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

Published
2017
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