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1. 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

2. 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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3. 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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4. 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

5. 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

6. 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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7. 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

8. 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, Jurgen, 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, Torok, Kathryn S., 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, Jurgen, 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.
Abstract: Objective To evaluate the baseline clinical characteristics of juvenile systemic sclerosis (SSc) patients in the international juvenile SSc inception cohort, and to compare these characteristics between the classically defined juvenile diffuse cutaneous SSc (dcSSc) and limited cutaneous SSc (lcSSc) subtypes and among those with overlap features. Methods A cross-sectional study was performed using baseline visit data. Information on demographic characteristics, organ system evaluation, treatment, and patient- and physician-reported outcomes was extracted and summary statistics applied. Comparisons between juvenile dcSSc and lcSSc subtypes and patients with and without overlap features were performed using chi-square and Mann-Whitney U tests. Results At data extraction, 150 juvenile SSc patients were enrolled across 42 centers; 83% were White, 80% were female, juvenile dcSSc predominated (72%), and 17% of the cohort had overlap features. Significant differences were found between juvenile dcSSc and juvenile lcSSc regarding modified Rodnan skin thickness score, the presence of Gottron's papules, digital tip ulceration, results of the 6-minute walk test, and composite pulmonary and cardiac involvement. All of these were more frequent in dcSSc except for cardiac involvement. Juvenile dcSSc patients had significantly worse scores for physician-rated disease activity and damage. A significantly higher occurrence of Gottron's papules and musculoskeletal and composite pulmonary involvement, and a significantly lower frequency of Raynaud's phenomenon, were seen in those with overlap features. Conclusion Results from a large international juvenile SSc cohort demonstrate significant differences between juvenile dcSSc and juvenile lcSSc patients, including more globally severe disease and increased frequency of interstitial lung disease in juvenile dcSSc patients, while those with lcSSc have more frequent cardiac involvement. Those with overlap features had an unexpected higher
Published: 2022
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9. 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

10. 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, Joao E., Frank, Charissa, Gaglioti, Andrea, Galetti, Ilaria, Grunert, Juergen, Guimaraes, 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, Mueller-Ladner, Ulf, Rednic, Simona, Romao, 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, Mosca, Marta, 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, Joao E., Frank, Charissa, Gaglioti, Andrea, Galetti, Ilaria, Grunert, Juergen, Guimaraes, 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, Mueller-Ladner, Ulf, Rednic, Simona, Romao, 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
Abstract: During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies.
Published: 2021

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

Author: UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, UCL - (SLuc) Service de rhumatologie, 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, Frédéric, 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, Mosca, Marta, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, UCL - (SLuc) Service de rhumatologie, 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, Frédéric, 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
Abstract: During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies.
Published: 2021

12. 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 M., 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, Mosca, Marta, 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 M., 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

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, Joao E., Frank, Charissa, Gaglioti, Andrea, Galetti, Ilaria, Grunert, Juergen, Guimaraes, 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, Mueller-Ladner, Ulf, Rednic, Simona, Romao, 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, Mosca, Marta, 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, Joao E., Frank, Charissa, Gaglioti, Andrea, Galetti, Ilaria, Grunert, Juergen, Guimaraes, 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, Mueller-Ladner, Ulf, Rednic, Simona, Romao, 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
Abstract: During the COVID-19 pandemic, the need to provide high-level care for a large number of patients with COVID-19 has affected resourcing for, and limited the routine care of, all other conditions. The impact of this health emergency is particularly relevant in the rare connective tissue diseases (rCTDs) communities, as discussed in this Perspective article by the multi-stakeholder European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ERN ReCONNET). The clinical, organizational and health economic challenges faced by health-care providers, institutions, patients and their families during the SARS-CoV-2 outbreak have demonstrated the importance of ensuring continuity of care in the management of rCTDs, including adequate diagnostics and monitoring protocols, and highlighted the need for a structured emergency strategy. The vulnerability of patients with rCTDs needs to be taken into account when planning future health policies, in preparation for not only the post-COVID era, but also any possible new health emergencies.
Published: 2021

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

Author: Infection & Immunity, MS Reumatologie/Immunologie/Infectie, Regenerative Medicine and Stem Cells, 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, van Laar, Jacob M, ERN ReCONNET investigators, Infection & Immunity, MS Reumatologie/Immunologie/Infectie, Regenerative Medicine and Stem Cells, 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, van Laar, Jacob M, and ERN ReCONNET investigators
Published: 2021

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

Author: Utrecht Valorisatie Centrum, Immuno/reuma patientenzorg, Child Health, Infection & Immunity, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Foeldvari, Ivan, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen, Boros, Christina, Chaitow, Jeffrey, Constantin, Tamas, Kasapcopur, Ozgur, Knupp Feitosa de Oliveira, Sheila, Pilkington, Clarissa, Toplak, Natasa, van Royen, Annet, Saad Magalhaes, Claudia, Vastert, Sebastiaan J, Wulffraat, Nico, Zulian, Francesco, Utrecht Valorisatie Centrum, Immuno/reuma patientenzorg, Child Health, Infection & Immunity, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Foeldvari, Ivan, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen, Boros, Christina, Chaitow, Jeffrey, Constantin, Tamas, Kasapcopur, Ozgur, Knupp Feitosa de Oliveira, Sheila, Pilkington, Clarissa, Toplak, Natasa, van Royen, Annet, Saad Magalhaes, Claudia, Vastert, Sebastiaan J, Wulffraat, Nico, and Zulian, Francesco
Published: 2021

16. Prior elicitation of the efficacy and tolerability of Methotrexate and Mycophenolate Mofetil in Juvenile Localised Scleroderma

Author: Desai, Yasin, Jaki, Thomas, Beresford, Michael W, Burnett, Thomas, Eleftheriou, Despina, Jacobe, Heidi, Leone, Valentina, Li, Suzanne, Mozgunov, Pavel, Ramanan, Athimalaipet V, Torok, Kathryn S, Anderson, Marina E, Anton, Jordi, Avcin, Tadej, Felton, Jessie, Foeldvari, Ivan, Laguda, Bisola, McErlane, Flora, Shaw, Lindsay, Zulian, Francesco, Pain, Clare E, Desai, Yasin, Jaki, Thomas, Beresford, Michael W, Burnett, Thomas, Eleftheriou, Despina, Jacobe, Heidi, Leone, Valentina, Li, Suzanne, Mozgunov, Pavel, Ramanan, Athimalaipet V, Torok, Kathryn S, Anderson, Marina E, Anton, Jordi, Avcin, Tadej, Felton, Jessie, Foeldvari, Ivan, Laguda, Bisola, McErlane, Flora, Shaw, Lindsay, Zulian, Francesco, and Pain, Clare E
Abstract: BackgroundEvidence is lacking for safe and effective treatments for juvenile localised scleroderma (JLS). Methotrexate (MTX) is commonly used first line and mycophenolate mofetil (MMF) second line, despite a limited evidence base. A head to head trial of these two medications would provide data on relative efficacy and tolerability. However, a frequentist approach is difficult to deliver in JLS, because of the numbers needed to sufficiently power a trial. A Bayesian approach could be considered.MethodsAn international consensus meeting was convened including an elicitation exercise where opinion was sought on the relative efficacy and tolerability of MTX compared to MMF to produce prior distributions for a future Bayesian trial. Secondary aims were to achieve consensus agreement on critical aspects of a future trial.ResultsAn international group of 12 clinical experts participated. Opinion suggested superior efficacy and tolerability of MMF compared to MTX; where most likely value of efficacy of MMF was 0.70 (95% confidence interval (CI) 0.34-0.90) and of MTX was 0.68 (95% CI 0.41-0.8). The most likely value of tolerability of MMF was 0.77 (95% CI 0.3-0.94) and of MTX was 0.62 (95% CI 0.32-0.84). The wider CI for MMF highlights that experts were less sure about relative efficacy and tolerability of MMF compared to MTX. Despite using a Bayesian approach, power calculations still produced a total sample size of 240 participants, reflecting the uncertainty amongst experts about the performance of MMF.ConclusionsKey factors have been defined regarding the design of a future Bayesian approach clinical trial including elicitation of prior opinion of the efficacy and tolerability of MTX and MMF in JLS. Combining further efficacy data on MTX and MMF with prior opinion could potentially reduce the pre-trial uncertainty so that, when combined with smaller trial sample sizes a compelling evidence base is available.
Published: 2021

17. Opportunistic infections in immunosuppressed patients with juvenile idiopathic arthritis: Analysis by the Pharmachild Safety Adjudication Committee

Author: Immuno/reuma patientenzorg, Child Health, Infectieziekten patientenzorg, Infection & Immunity, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, Giancane, Gabriella, Swart, Joost F., Castagnola, Elio, Groll, Andreas H., Horneff, Gerd, Huppertz, Hans Iko, Lovell, Daniel J., Wolfs, Tom, Herlin, Troels, Dolezalova, Pavla, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Maritsi, Despoina, Constantin, Tamas, Vargova, Veronika, Sawhney, Sujata, Rygg, Marite, Oliveira, Sheila K., Cattalini, Marco, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Cuttica, Ruben, Garay, Stella Maris, Brunner, Jurgen, Emminger, Wolfgang, Appenzeller, Simone, Len, Claudio, Saad Magalhaes, Claudia, Telcharova-Mihaylovska, Albena, Harjacek, Miroslav, Jelusic, Marija, Estmann, Anne, Nielsen, Susan, Herrera Mora, Cristina, Gervais, Elisabeth, Koné-Paut, Isabelle, Quartier, Pierre, Foeldvari, Ivan, Lutz, Thomas, Minden, Kirsten, Tzaribachev, Nikolay, Trachana, Maria, Tsitsami, Elena, Vougiouka, Olga, Orban, Ilonka, Harel, Liora, Hashkes, Philip, Uziel, Yosef, Cimaz, Rolando, Civino, Adele, Consolini, Rita, D'Angelo, Gianfranco, De Benedetti, Fabrizio, Filocamo, Giovanni, Fueri, Elena, Gallizzi, Romina, Maggio, Maria Cristina, Magnolia, Maria Greca, Miniaci, Angela, Montin, Davide, Olivieri, Alma Nunzia, Pastore, Serena, Rigante, Donato, Zulian, Francesco, Rumba-Rozenfelde, Ingrida, Stanevicha, Valda, Panaviene, Violeta, Rodriguez Lozano, Ana Luisa, Rubio-Perez, Nadina, Vega Cornejo, Gabriel, Hoppenreijs, Esther, Kamphuis, Sylvia, Flato, Berit, Nordal, Ellen Berit, Abdwani, Reem, Miraval, Tatiana, Paz Gastanaga, Maria Eliana, Smolewska, Elzbieta, Ailioaie, Constantin, Cochino, Alexis Virgil, Laday, Matilda, Lazar, Calin, Alexeeva, Ekaterina, Chasnyk, Vyacheslav, Keltsev, Vladimir, Suwairi, Wafaa Mohammed Saad, Vijatov-Djuric, Gordana, Vojinovic, Jelena, Arkachaisri, Thaschawee, Koskova, Elena, Avcin, Tadej, Ally, Mahmood, Van Rensburg, Christa Janse, Louw, Ingrid, Lopez, Jordi Anton, Boteanu, Alina Lucica, Calvo Penades, Inmaculada, De Inocencio, Jaime, Mesa-Del-Castillo, Pablo, Moreno, Estefania, Remesal, Agustin, Hofer, Michael, Gok, Faysal, Ozen, Seza, Ramanan, Athimalaipet, Pallotti, Chiara, Villa, Luca, Immuno/reuma patientenzorg, Child Health, Infectieziekten patientenzorg, Infection & Immunity, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, Giancane, Gabriella, Swart, Joost F., Castagnola, Elio, Groll, Andreas H., Horneff, Gerd, Huppertz, Hans Iko, Lovell, Daniel J., Wolfs, Tom, Herlin, Troels, Dolezalova, Pavla, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Maritsi, Despoina, Constantin, Tamas, Vargova, Veronika, Sawhney, Sujata, Rygg, Marite, Oliveira, Sheila K., Cattalini, Marco, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Cuttica, Ruben, Garay, Stella Maris, Brunner, Jurgen, Emminger, Wolfgang, Appenzeller, Simone, Len, Claudio, Saad Magalhaes, Claudia, Telcharova-Mihaylovska, Albena, Harjacek, Miroslav, Jelusic, Marija, Estmann, Anne, Nielsen, Susan, Herrera Mora, Cristina, Gervais, Elisabeth, Koné-Paut, Isabelle, Quartier, Pierre, Foeldvari, Ivan, Lutz, Thomas, Minden, Kirsten, Tzaribachev, Nikolay, Trachana, Maria, Tsitsami, Elena, Vougiouka, Olga, Orban, Ilonka, Harel, Liora, Hashkes, Philip, Uziel, Yosef, Cimaz, Rolando, Civino, Adele, Consolini, Rita, D'Angelo, Gianfranco, De Benedetti, Fabrizio, Filocamo, Giovanni, Fueri, Elena, Gallizzi, Romina, Maggio, Maria Cristina, Magnolia, Maria Greca, Miniaci, Angela, Montin, Davide, Olivieri, Alma Nunzia, Pastore, Serena, Rigante, Donato, Zulian, Francesco, Rumba-Rozenfelde, Ingrida, Stanevicha, Valda, Panaviene, Violeta, Rodriguez Lozano, Ana Luisa, Rubio-Perez, Nadina, Vega Cornejo, Gabriel, Hoppenreijs, Esther, Kamphuis, Sylvia, Flato, Berit, Nordal, Ellen Berit, Abdwani, Reem, Miraval, Tatiana, Paz Gastanaga, Maria Eliana, Smolewska, Elzbieta, Ailioaie, Constantin, Cochino, Alexis Virgil, Laday, Matilda, Lazar, Calin, Alexeeva, Ekaterina, Chasnyk, Vyacheslav, Keltsev, Vladimir, Suwairi, Wafaa Mohammed Saad, Vijatov-Djuric, Gordana, Vojinovic, Jelena, Arkachaisri, Thaschawee, Koskova, Elena, Avcin, Tadej, Ally, Mahmood, Van Rensburg, Christa Janse, Louw, Ingrid, Lopez, Jordi Anton, Boteanu, Alina Lucica, Calvo Penades, Inmaculada, De Inocencio, Jaime, Mesa-Del-Castillo, Pablo, Moreno, Estefania, Remesal, Agustin, Hofer, Michael, Gok, Faysal, Ozen, Seza, Ramanan, Athimalaipet, Pallotti, Chiara, and Villa, Luca
Published: 2020

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

Author: Medical Humanities Onderzoek Team 2, JC onderzoeksprogramma Methodologie, Child Health, Immuno/reuma patientenzorg, Infection & Immunity, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, De Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M., Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D., McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, Van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W., Medical Humanities Onderzoek Team 2, JC onderzoeksprogramma Methodologie, Child Health, Immuno/reuma patientenzorg, Infection & Immunity, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, De Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M., Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D., McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, Van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W.
Published: 2020

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

Author: Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W
Published: 2019

20. Toward New Classification Criteria for Juvenile Idiopathic Arthritis : First Steps, Pediatric Rheumatology International Trials Organization International Consensus

Author: Martini, Alberto, Ravelli, Angelo, Avcin, Tadej, Beresford, Michael W, Burgos-Vargas, Ruben, Cuttica, Ruben, Ilowite, Norman T, Khubchandani, Raju, Laxer, Ronald M, Lovell, Daniel J, Petty, Ross E, Wallace, Carol A, Wulffraat, Nico M, Pistorio, Angela, Ruperto, Nicolino, Pediatric Rheumatology International Trials Organization (PRINTO), Martini, Alberto, Ravelli, Angelo, Avcin, Tadej, Beresford, Michael W, Burgos-Vargas, Ruben, Cuttica, Ruben, Ilowite, Norman T, Khubchandani, Raju, Laxer, Ronald M, Lovell, Daniel J, Petty, Ross E, Wallace, Carol A, Wulffraat, Nico M, Pistorio, Angela, Ruperto, Nicolino, and Pediatric Rheumatology International Trials Organization (PRINTO)
Published: 2019

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

Author: Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., Foeldvari, Ivan, Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., and Foeldvari, Ivan
Published: 2019

22. European consensus-based recommendations for the diagnosis and treatment of Kawasaki disease - the SHARE initiative

Author: de Graeff, Nienke, Groot, Noortje, Ozen, Seza, Eleftheriou, Despina, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen-Kerkhof, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Brogan, Paul, Beresford, Michael W, de Graeff, Nienke, Groot, Noortje, Ozen, Seza, Eleftheriou, Despina, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen-Kerkhof, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Brogan, Paul, and Beresford, Michael W
Published: 2019

23. 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

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

Author: de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W
Published: 2019

25. Idiopathic inflammatory myopathies: state of the art on clinical practice guidelines [corrected].

Author: UCL - (SLuc) Service de rhumatologie, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, Meyer, Alain, Scirè, Carlo Alberto, Talarico, Rosaria, Alexander, Tobias, Amoura, Zahir, Avcin, Tadej, Barsotti, Simone, Beretta, Lorenzo, Blagojevic, Jelena, Burmester, Gerd, Cavazzana, Ilaria, Cherrin, Patrick, Damian, Laura, Doria, Andrea, Fonseca, João Eurico, Furini, Federica, Galetti, Ilaria, Houssiau, Frédéric, Krieg, Thomas, Maddalena, Larosa, Launay, David, Campanilho-Marques, Raquel, Martin, Thierry, Matucci-Cerinic, Marco, Moinzadeh, Pia, Montecucco, Carlomaurizio, Moraes-Fontes, Maria Francisca, Mouthon, Luc, Neri, Rossella, Paolino, Sabrina, Piette, Yves, Rednic, Simona, Tamirou, Farah, Tincani, Angela, Toplak, Natasa, Bombardieri, Stefano, Hachulla, Eric, Mueller-Ladner, Ulf, Schneider, Matthias, Smith, Vanessa, Vieira, Ana, Cutolo, Maurizio, Mosca, Marta, Cavagna, Lorenzo, UCL - (SLuc) Service de rhumatologie, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, Meyer, Alain, Scirè, Carlo Alberto, Talarico, Rosaria, Alexander, Tobias, Amoura, Zahir, Avcin, Tadej, Barsotti, Simone, Beretta, Lorenzo, Blagojevic, Jelena, Burmester, Gerd, Cavazzana, Ilaria, Cherrin, Patrick, Damian, Laura, Doria, Andrea, Fonseca, João Eurico, Furini, Federica, Galetti, Ilaria, Houssiau, Frédéric, Krieg, Thomas, Maddalena, Larosa, Launay, David, Campanilho-Marques, Raquel, Martin, Thierry, Matucci-Cerinic, Marco, Moinzadeh, Pia, Montecucco, Carlomaurizio, Moraes-Fontes, Maria Francisca, Mouthon, Luc, Neri, Rossella, Paolino, Sabrina, Piette, Yves, Rednic, Simona, Tamirou, Farah, Tincani, Angela, Toplak, Natasa, Bombardieri, Stefano, Hachulla, Eric, Mueller-Ladner, Ulf, Schneider, Matthias, Smith, Vanessa, Vieira, Ana, Cutolo, Maurizio, Mosca, Marta, and Cavagna, Lorenzo
Abstract: Idiopathic inflammatory myopathies (IIMs) encompass a heterogeneous group of rare autoimmune diseases characterised by muscle weakness and inflammation, but in antisynthetase syndrome arthritis and interstitial lung disease are more frequent and often inaugurate the disease. Clinical practice guidelines (CPGs) have been proposed for IIMs, but they are sparse and heterogeneous. This work aimed at identifying: i) current available CPGs for IIMs, ii) patients ' and clinicians' unmet needs not covered by CPGs. It has been performed in the framework of the European Reference Network on rare and complex connective tissue and musculoskeletal diseases (ReCONNET), a network of centre of expertise and patients funded by the European Union's Health Programme. Fourteen original CPGs were identified, notably recommending that: i) extra-muscular involvements should be assessed; ii) corticosteroids and methotrexate or azathioprine are first-line therapies of IIMs. ii) IVIG is a treatment of resistant-DM that may be also used in other resistant-IIMs; iii) physical therapy and sun protection (in DM patients) are part of the treatment; v) tumour screening for patients with DM include imaging of chest, abdomen, pelvis and breast (in woman) along with colonoscopy (in patients over 50 years); vi) disease activity and damages should be monitor using standardised and validated tools. Yet, only half of these CPGs were evidence-based. Crucial unmet needs were identified both by patients and clinicians. In particular, there was a lack of large multidisciplinary working group and of patients ' preferences. The following fields were not or inappropriately targeted: diagnosis; management of extra-muscular involvements other than skin; co-morbidities and severe manifestations.
Published: 2019

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

Author: Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W
Published: 2019

27. 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

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

Author: de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W
Published: 2019

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

Author: Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., Foeldvari, Ivan, Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., and Foeldvari, Ivan
Published: 2019

30. Toward New Classification Criteria for Juvenile Idiopathic Arthritis : First Steps, Pediatric Rheumatology International Trials Organization International Consensus

Author: Martini, Alberto, Ravelli, Angelo, Avcin, Tadej, Beresford, Michael W, Burgos-Vargas, Ruben, Cuttica, Ruben, Ilowite, Norman T, Khubchandani, Raju, Laxer, Ronald M, Lovell, Daniel J, Petty, Ross E, Wallace, Carol A, Wulffraat, Nico M, Pistorio, Angela, Ruperto, Nicolino, Pediatric Rheumatology International Trials Organization (PRINTO), Martini, Alberto, Ravelli, Angelo, Avcin, Tadej, Beresford, Michael W, Burgos-Vargas, Ruben, Cuttica, Ruben, Ilowite, Norman T, Khubchandani, Raju, Laxer, Ronald M, Lovell, Daniel J, Petty, Ross E, Wallace, Carol A, Wulffraat, Nico M, Pistorio, Angela, Ruperto, Nicolino, and Pediatric Rheumatology International Trials Organization (PRINTO)
Published: 2019

31. European consensus-based recommendations for the diagnosis and treatment of Kawasaki disease - the SHARE initiative

Author: de Graeff, Nienke, Groot, Noortje, Ozen, Seza, Eleftheriou, Despina, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen-Kerkhof, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Brogan, Paul, Beresford, Michael W, de Graeff, Nienke, Groot, Noortje, Ozen, Seza, Eleftheriou, Despina, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen-Kerkhof, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Brogan, Paul, and Beresford, Michael W
Published: 2019

32. 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

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

Author: Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W
Published: 2019

34. Toward New Classification Criteria for Juvenile Idiopathic Arthritis : First Steps, Pediatric Rheumatology International Trials Organization International Consensus

Author: Martini, Alberto, Ravelli, Angelo, Avcin, Tadej, Beresford, Michael W, Burgos-Vargas, Ruben, Cuttica, Ruben, Ilowite, Norman T, Khubchandani, Raju, Laxer, Ronald M, Lovell, Daniel J, Petty, Ross E, Wallace, Carol A, Wulffraat, Nico M, Pistorio, Angela, Ruperto, Nicolino, Pediatric Rheumatology International Trials Organization (PRINTO), Martini, Alberto, Ravelli, Angelo, Avcin, Tadej, Beresford, Michael W, Burgos-Vargas, Ruben, Cuttica, Ruben, Ilowite, Norman T, Khubchandani, Raju, Laxer, Ronald M, Lovell, Daniel J, Petty, Ross E, Wallace, Carol A, Wulffraat, Nico M, Pistorio, Angela, Ruperto, Nicolino, and Pediatric Rheumatology International Trials Organization (PRINTO)
Published: 2019

35. European consensus-based recommendations for the diagnosis and treatment of Kawasaki disease - the SHARE initiative

Author: de Graeff, Nienke, Groot, Noortje, Ozen, Seza, Eleftheriou, Despina, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen-Kerkhof, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Brogan, Paul, Beresford, Michael W, de Graeff, Nienke, Groot, Noortje, Ozen, Seza, Eleftheriou, Despina, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen-Kerkhof, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Brogan, Paul, and Beresford, Michael W
Published: 2019

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

Author: de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W
Published: 2019

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

Author: Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., Foeldvari, Ivan, Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., and Foeldvari, Ivan
Published: 2019

38. 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

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

Author: Immuno/reuma onderzoek 1 (Vastert), Child Health, JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma patientenzorg, Infection & Immunity, Cluster B, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, Immuno/reuma onderzoek 1 (Vastert), Child Health, JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma patientenzorg, Infection & Immunity, Cluster B, CTI Van Loosdregt, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, Ozen, Seza, Marks, Stephen D, Brogan, Paul, Groot, Noortje, de Graeff, Nienke, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W
Published: 2019

40. European consensus-based recommendations for the diagnosis and treatment of Kawasaki disease - the SHARE initiative

Author: JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma onderzoek 1 (Vastert), Child Health, Cluster B, Immuno/reuma patientenzorg, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, de Graeff, Nienke, Groot, Noortje, Ozen, Seza, Eleftheriou, Despina, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen-Kerkhof, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Brogan, Paul, Beresford, Michael W, JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma onderzoek 1 (Vastert), Child Health, Cluster B, Immuno/reuma patientenzorg, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, Onderzoek, de Graeff, Nienke, Groot, Noortje, Ozen, Seza, Eleftheriou, Despina, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen-Kerkhof, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Brogan, Paul, and Beresford, Michael W
Published: 2019

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

Author: JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma onderzoek 1 (Vastert), Child Health, Cluster B, Immuno/reuma patientenzorg, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, Beresford, Michael W, JC onderzoeksprogramma Methodologie, Medical Humanities Onderzoek Team 2, Immuno/reuma onderzoek 1 (Vastert), Child Health, Cluster B, Immuno/reuma patientenzorg, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), Immunologie/Reumatologie, Regenerative Medicine and Stem Cells, de Graeff, Nienke, Groot, Noortje, Brogan, Paul, Ozen, Seza, Avcin, Tadej, Bader-Meunier, Brigitte, Dolezalova, Pavla, Feldman, Brian M, Kone-Paut, Isabelle, Lahdenne, Pekka, Marks, Stephen D, McCann, Liza, Pilkington, Clarissa, Ravelli, Angelo, van Royen, Annet, Uziel, Yosef, Vastert, Bas, Wulffraat, Nico, Kamphuis, Sylvia, and Beresford, Michael W
Published: 2019

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

Author: Immuno/reuma patientenzorg, Child Health, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), CTI Van Loosdregt, Immunologie/Reumatologie, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Onderzoek, Regenerative Medicine and Stem Cells, Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., Foeldvari, Ivan, Immuno/reuma patientenzorg, Child Health, Infection & Immunity, Immuno/reuma onderzoek 5 (Vastert2), CTI Van Loosdregt, Immunologie/Reumatologie, Cluster B, Immuno/reuma onderzoek 1 (Vastert), Onderzoek, Regenerative Medicine and Stem Cells, Zulian, Francesco, Culpo, Roberta, Sperotto, Francesca, Anton, Jordi, Avcin, Tadej, Baildam, Eileen M., Boros, Christina, Chaitow, Jeffrey, Constantin, Tamàs, Kasapcopur, Ozgur, Knupp Feitosa De Oliveira, Sheila, Pilkington, Clarissa A., Russo, Ricardo, Toplak, Natasa, Van Royen, Annet, Saad Magalhães, Claudia, Vastert, Sebastiaan J., Wulffraat, Nico M., and Foeldvari, Ivan
Published: 2019

43. Toward New Classification Criteria for Juvenile Idiopathic Arthritis: First Steps, Pediatric Rheumatology International Trials Organization International Consensus

Author: Cluster B, Immuno/reuma onderzoek 1 (Vastert), Onderzoek, Child Health, Regenerative Medicine and Stem Cells, Infection & Immunity, Immunologie/Reumatologie, BOO, Divisieleiding O&O, Infectiezieken, Reumatologie, Reumatologie onderzoek 2, Martini, Alberto, Ravelli, Angelo, Avcin, Tadej, Beresford, Michael W, Burgos-Vargas, Ruben, Cuttica, Ruben, Ilowite, Norman T, Khubchandani, Raju, Laxer, Ronald M, Lovell, Daniel J, Petty, Ross E, Wallace, Carol A, Wulffraat, Nico M, Pistorio, Angela, Ruperto, Nicolino, Pediatric Rheumatology International Trials Organization (PRINTO), Cluster B, Immuno/reuma onderzoek 1 (Vastert), Onderzoek, Child Health, Regenerative Medicine and Stem Cells, Infection & Immunity, Immunologie/Reumatologie, BOO, Divisieleiding O&O, Infectiezieken, Reumatologie, Reumatologie onderzoek 2, Martini, Alberto, Ravelli, Angelo, Avcin, Tadej, Beresford, Michael W, Burgos-Vargas, Ruben, Cuttica, Ruben, Ilowite, Norman T, Khubchandani, Raju, Laxer, Ronald M, Lovell, Daniel J, Petty, Ross E, Wallace, Carol A, Wulffraat, Nico M, Pistorio, Angela, Ruperto, Nicolino, and Pediatric Rheumatology International Trials Organization (PRINTO)
Published: 2019

44. Educational initiatives and training for paediatric rheumatology in Europe

Author: Foster, Helen E., Vojinovic, Jelena, Constantin, Tamas, Martini, Alberto, Dolezalova, Pavla, Uziel, Yosef, Smith, E. M.D., Lamot, Lovro, Wouters, Carine, Avcin, Tadej, Wulffraat, Nico, Foster, Helen E., Vojinovic, Jelena, Constantin, Tamas, Martini, Alberto, Dolezalova, Pavla, Uziel, Yosef, Smith, E. M.D., Lamot, Lovro, Wouters, Carine, Avcin, Tadej, and Wulffraat, Nico
Published: 2018

45. Treating juvenile idiopathic arthritis to target : Recommendations of an international task force

Author: Ravelli, Angelo, Consolaro, Alessandro, Horneff, Gerd, Laxer, Ronald M., Lovell, Daniel J., Wulffraat, Nico M., Akikusa, Jonathan D., Al-Mayouf, Sulaiman M., Antón, Jordi, Avcin, Tadej, Berard, Roberta A., Beresford, Michael W., Burgos-Vargas, Ruben, Cimaz, Rolando, De Benedetti, Fabrizio, Demirkaya, Erkan, Foell, Dirk, Itoh, Yasuhiko, Lahdenne, Pekka, Morgan, Esi M., Quartier, Pierre, Ruperto, Nicolino, Russo, Ricardo, Saad-Magalhães, Claudia, Sawhney, Sujata, Scott, Christiaan, Shenoi, Susan, Swart, Joost F., Uziel, Yosef, Vastert, Sebastiaan J., Smolen, Josef S., Ravelli, Angelo, Consolaro, Alessandro, Horneff, Gerd, Laxer, Ronald M., Lovell, Daniel J., Wulffraat, Nico M., Akikusa, Jonathan D., Al-Mayouf, Sulaiman M., Antón, Jordi, Avcin, Tadej, Berard, Roberta A., Beresford, Michael W., Burgos-Vargas, Ruben, Cimaz, Rolando, De Benedetti, Fabrizio, Demirkaya, Erkan, Foell, Dirk, Itoh, Yasuhiko, Lahdenne, Pekka, Morgan, Esi M., Quartier, Pierre, Ruperto, Nicolino, Russo, Ricardo, Saad-Magalhães, Claudia, Sawhney, Sujata, Scott, Christiaan, Shenoi, Susan, Swart, Joost F., Uziel, Yosef, Vastert, Sebastiaan J., and Smolen, Josef S.
Published: 2018

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

Author: Kuemmerle-Deschner, Jasmin B., Hansmann, Sandra, Wulffraat, Nico M., Vastert, Sebastiaan J., Hens, Kristien, Anton, Jordi, Avcin, Tadej, Martini, Alberto, Koné-Paut, Isabelle, Uziel, Yosef, Ravelli, Angelo, Wouters, Carine, Shaw, David, Özen, Seza, Eikelberg, Andreas, Prakken, Berent J., Ruperto, Nicolino, Horneff, Gerd, Constantin, Tamas, Beresford, Michael W., Sikken, Marijn, Foster, Helen E., Haug, Iris, Schuller, Sabrina, Jägle, Christine, Benseler, Susanne M., Kuemmerle-Deschner, Jasmin B., Hansmann, Sandra, Wulffraat, Nico M., Vastert, Sebastiaan J., Hens, Kristien, Anton, Jordi, Avcin, Tadej, Martini, Alberto, Koné-Paut, Isabelle, Uziel, Yosef, Ravelli, Angelo, Wouters, Carine, Shaw, David, Özen, Seza, Eikelberg, Andreas, Prakken, Berent J., Ruperto, Nicolino, Horneff, Gerd, Constantin, Tamas, Beresford, Michael W., Sikken, Marijn, Foster, Helen E., Haug, Iris, Schuller, Sabrina, Jägle, Christine, and Benseler, Susanne M.
Published: 2018

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

Author: Kuemmerle-Deschner, Jasmin B., Hansmann, Sandra, Wulffraat, Nico M., Vastert, Sebastiaan J., Hens, Kristien, Anton, Jordi, Avcin, Tadej, Martini, Alberto, Koné-Paut, Isabelle, Uziel, Yosef, Ravelli, Angelo, Wouters, Carine, Shaw, David, Özen, Seza, Eikelberg, Andreas, Prakken, Berent J., Ruperto, Nicolino, Horneff, Gerd, Constantin, Tamas, Beresford, Michael W., Sikken, Marijn, Foster, Helen E., Haug, Iris, Schuller, Sabrina, Jägle, Christine, Benseler, Susanne M., Kuemmerle-Deschner, Jasmin B., Hansmann, Sandra, Wulffraat, Nico M., Vastert, Sebastiaan J., Hens, Kristien, Anton, Jordi, Avcin, Tadej, Martini, Alberto, Koné-Paut, Isabelle, Uziel, Yosef, Ravelli, Angelo, Wouters, Carine, Shaw, David, Özen, Seza, Eikelberg, Andreas, Prakken, Berent J., Ruperto, Nicolino, Horneff, Gerd, Constantin, Tamas, Beresford, Michael W., Sikken, Marijn, Foster, Helen E., Haug, Iris, Schuller, Sabrina, Jägle, Christine, and Benseler, Susanne M.
Published: 2018

48. Treating juvenile idiopathic arthritis to target : Recommendations of an international task force

Author: Ravelli, Angelo, Consolaro, Alessandro, Horneff, Gerd, Laxer, Ronald M., Lovell, Daniel J., Wulffraat, Nico M., Akikusa, Jonathan D., Al-Mayouf, Sulaiman M., Antón, Jordi, Avcin, Tadej, Berard, Roberta A., Beresford, Michael W., Burgos-Vargas, Ruben, Cimaz, Rolando, De Benedetti, Fabrizio, Demirkaya, Erkan, Foell, Dirk, Itoh, Yasuhiko, Lahdenne, Pekka, Morgan, Esi M., Quartier, Pierre, Ruperto, Nicolino, Russo, Ricardo, Saad-Magalhães, Claudia, Sawhney, Sujata, Scott, Christiaan, Shenoi, Susan, Swart, Joost F., Uziel, Yosef, Vastert, Sebastiaan J., Smolen, Josef S., Ravelli, Angelo, Consolaro, Alessandro, Horneff, Gerd, Laxer, Ronald M., Lovell, Daniel J., Wulffraat, Nico M., Akikusa, Jonathan D., Al-Mayouf, Sulaiman M., Antón, Jordi, Avcin, Tadej, Berard, Roberta A., Beresford, Michael W., Burgos-Vargas, Ruben, Cimaz, Rolando, De Benedetti, Fabrizio, Demirkaya, Erkan, Foell, Dirk, Itoh, Yasuhiko, Lahdenne, Pekka, Morgan, Esi M., Quartier, Pierre, Ruperto, Nicolino, Russo, Ricardo, Saad-Magalhães, Claudia, Sawhney, Sujata, Scott, Christiaan, Shenoi, Susan, Swart, Joost F., Uziel, Yosef, Vastert, Sebastiaan J., and Smolen, Josef S.
Published: 2018

49. Educational initiatives and training for paediatric rheumatology in Europe

Author: Foster, Helen E., Vojinovic, Jelena, Constantin, Tamas, Martini, Alberto, Dolezalova, Pavla, Uziel, Yosef, Smith, E. M.D., Lamot, Lovro, Wouters, Carine, Avcin, Tadej, Wulffraat, Nico, Foster, Helen E., Vojinovic, Jelena, Constantin, Tamas, Martini, Alberto, Dolezalova, Pavla, Uziel, Yosef, Smith, E. M.D., Lamot, Lovro, Wouters, Carine, Avcin, Tadej, and Wulffraat, Nico
Published: 2018

50. Treating juvenile idiopathic arthritis to target: recommendations of an international task force

Author: Ravelli, Angelo, Consolaro, Alessandro, Horneff, Gerd, Laxer, Ronald M., Lovell, Daniel J., Wulffraat, Nico M., Akikusa, Jonathan D., Al-Mayouf, Sulaiman M., Anton, Jordi, Avcin, Tadej, Berard, Roberta A., Beresford, Michael W., Burgos-Vargas, Ruben, Cimaz, Rolando, De Benedetti, Fabrizio, Demirkaya, Erkan, Foell, Dirk, Itoh, Yasuhiko, Lahdenne, Pekka, Morgan, Esi M., Quartier, Pierre, Ruperto, Nicolino, Russo, Ricardo, Saad-Magalhaes, Claudia, Sawhney, Sujata, Scott, Christiaan, Shenoi, Susan, Swart, Joost F., Uziel, Yosef, Vastert, Sebastiaan J., Smolen, Josef S., Ravelli, Angelo, Consolaro, Alessandro, Horneff, Gerd, Laxer, Ronald M., Lovell, Daniel J., Wulffraat, Nico M., Akikusa, Jonathan D., Al-Mayouf, Sulaiman M., Anton, Jordi, Avcin, Tadej, Berard, Roberta A., Beresford, Michael W., Burgos-Vargas, Ruben, Cimaz, Rolando, De Benedetti, Fabrizio, Demirkaya, Erkan, Foell, Dirk, Itoh, Yasuhiko, Lahdenne, Pekka, Morgan, Esi M., Quartier, Pierre, Ruperto, Nicolino, Russo, Ricardo, Saad-Magalhaes, Claudia, Sawhney, Sujata, Scott, Christiaan, Shenoi, Susan, Swart, Joost F., Uziel, Yosef, Vastert, Sebastiaan J., and Smolen, Josef S.
Abstract: Recent therapeutic advances in juvenile idiopathic arthritis (JIA) have made remission an achievable goal for most patients. Reaching this target leads to improved outcomes. The objective was to develop recommendations for treating JIA to target. A Steering Committee formulated a set of recommendations based on evidence derived from a systematic literature review. These were subsequently discussed, amended and voted on by an international Task Force of 30 paediatric rheumatologists in a consensus-based, Delphi-like procedure. Although the literature review did not reveal trials that compared a treat-to-target approach with another or no strategy, it provided indirect evidence regarding an optimised approach to therapy that facilitated development of recommendations. The group agreed on six overarching principles and eight recommendations. The main treatment target, which should be based on a shared decision with parents/patients, was defined as remission, with the alternative target of low disease activity. The frequency and timeline of follow-up evaluations to ensure achievement and maintenance of the target depend on JIA category and level of disease activity. Additional recommendations emphasise the importance of ensuring adequate growth and development and avoiding long-term systemic glucocorticoid administration to maintain the target. All items were agreed on by more than 80% of the members of the Task Force. A research agenda was formulated. The Task Force developed recommendations for treating JIA to target, being aware that the evidence is not strong and needs to be expanded by future research. These recommendations can inform various stakeholders about strategies to reach optimal outcomes for JIA.
Published: 2018

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