365 results on '"Avcin, T."'
Search Results
2. PReS-endorsed international childhood lupus T2T task force definition of childhood lupus low disease activity state (cLLDAS)
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Goilav, B., Marks, S., Oni, L., Smith, E.M.D., Aggarwal, A., Ainsworth, J., Al-Abadi, E., Avcin, T., Bortey, L., Burnham, J., Ciurtin, C., Hedrich, C.M., Kamphuis, S., Lambert, L., Levy, D.M., Lewandowski, L., Maxwell, N., Morand, E., Ozen, S., Pain, C.E., Ravelli, A., Saad Magalhaes, C., Pilkington, C., Schonenberg-Meinema, D., Scott, C., Tullus, K., and Beresford, M.W.
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- 2023
- Full Text
- View/download PDF
3. AB1701 IS THERE A DIFFERENCE IN THE NUMBER OF INVOLVED ORGAN SYSTEMS BETWEEN JUVENILE DIFFUSE AND LIMITED SUBTYPE SYSTEMIC SCLEROSIS PATIENTS?
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Foeldvari, I., primary, Klotsche, J., additional, Torok, K., additional, Kasapcopur, O., additional, Adrovic, A., additional, Feldman, B., additional, Antón, J., additional, Johnson, S. R., additional, Sztajnbok, F. R., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Khubchandani, R., additional, Stanevicha, V., additional, Schonenberg, D., additional, Al-Abadi, E., additional, Alexeeva, E., additional, Katsikas, M., additional, Sawhney, S., additional, Smith, V., additional, Appenzeller, S., additional, Avcin, T., additional, Kostik, M., additional, Lehman, T., additional, Malcova, H., additional, Marrani, E., additional, Pain, C., additional, Patwardhan, A., additional, Sifuentes-Giraldo, W. A., additional, Vasquez-Canizares, N., additional, Abu Al Saoud, S., additional, Costa Reis, P., additional, Janarthanan, M., additional, Moll, M., additional, Nemcova, D., additional, Santos, M. J., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Kaiser, D., additional, Kallinich, T., additional, Lazarevic, D., additional, Minden, K., additional, Nuruzzaman, F., additional, Opsahl Hetlevik, S., additional, Sparchez, M., additional, Uziel, Y., additional, and Helmus, N., additional
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- 2024
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4. POS0758 PRESENCE OF NAILFOLD CAPILLARY CHANGES CORRELATES WITH MORE SEVERE ORGAN INVOLVEMENT IN JUVENILE SYSTEMIC SCLERODERMA. RESULTS OF THE JUVENILE SCLERODERMA INCEPTION COHORT.
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Foeldvari, I., primary, Klotsche, J., additional, Torok, K., additional, Kasapcopur, O., additional, Adrovic, A., additional, Feldman, B., additional, Antón, J., additional, Johnson, S. R., additional, Sztajnbok, F. R., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Stanevicha, V., additional, Schonenberg, D., additional, Alexeeva, E., additional, Katsikas, M., additional, Khubchandani, R., additional, Sawhney, S., additional, Smith, V., additional, Al-Abadi, E., additional, Appenzeller, S., additional, Avcin, T., additional, Kostik, M., additional, Lehman, T., additional, Malcova, H., additional, Marrani, E., additional, Pain, C., additional, Patwardhan, A., additional, Sifuentes-Giraldo, W. A., additional, Vasquez-Canizares, N., additional, Abu Al Saoud, S., additional, Costa Reis, P., additional, Janarthanan, M., additional, Moll, M., additional, Nemcova, D., additional, Santos, M. J., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Kaiser, D., additional, Kallinich, T., additional, Lazarevic, D., additional, Minden, K., additional, Nielsen, S., additional, Nuruzzaman, F., additional, Opsahl Hetlevik, S., additional, Sparchez, M., additional, Uziel, Y., additional, and Helmus, N., additional
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- 2024
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5. POS0770 DIFFERENCES IN CLINICAL PRESENTATION BETWEEN JUVENILE SYSTEMIC SCLEROSIS PATIENTS WITH DIFFUSE AND LIMITED SUBTYPE. RESULTS FROM THE JUVENILE SCLERODERMA INCEPTION COHORT.
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Foeldvari, I., primary, Klotsche, J., additional, Torok, K., additional, Kasapcopur, O., additional, Adrovic, A., additional, Feldman, B., additional, Antón, J., additional, Johnson, S. R., additional, Sztajnbok, F. R., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Khubchandani, R., additional, Stanevicha, V., additional, Schonenberg, D., additional, Al-Abadi, E., additional, Alexeeva, E., additional, Katsikas, M., additional, Sawhney, S., additional, Smith, V., additional, Appenzeller, S., additional, Avcin, T., additional, Kostik, M., additional, Lehman, T., additional, Malcova, H., additional, Marrani, E., additional, Pain, C., additional, Patwardhan, A., additional, Sifuentes-Giraldo, W. A., additional, Vasquez-Canizares, N., additional, Abu Al Saoud, S., additional, Costa Reis, P., additional, Janarthanan, M., additional, Moll, M., additional, Nemcova, D., additional, Santos, M. J., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Kaiser, D., additional, Kallinich, T., additional, Lazarevic, D., additional, Minden, K., additional, Nuruzzaman, F., additional, Opsahl Hetlevik, S., additional, Sparchez, M., additional, Uziel, Y., additional, and Helmus, N., additional
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- 2024
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- View/download PDF
6. Defining remission in childhood-onset lupus: PReS-endorsed consensus definitions by an international task force
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Smith, E.M.D., primary, Aggarwal, A., additional, Ainsworth, J., additional, Al-Abadi, E., additional, Avcin, T., additional, Bortey, L., additional, Burnham, J., additional, Ciurtin, C., additional, Hedrich, C.M., additional, Kamphuis, S., additional, Lambert, L., additional, Levy, D.M., additional, Lewandowski, L., additional, Maxwell, N., additional, Morand, E., additional, Özen, S., additional, Pain, C.E., additional, Ravelli, A., additional, Saad Magalhaes, C., additional, Pilkington, C., additional, Schonenberg-Meinema, D., additional, Scott, C., additional, Tullus, K., additional, Beresford, M.W., additional, Goilav, B., additional, Goss, N., additional, Oni, L., additional, and Marks, S.D., additional
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- 2024
- Full Text
- View/download PDF
7. Defining remission in childhood-onset lupus:PReS-endorsed consensus definitions by an international task force
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Smith, E. M.D., Aggarwal, A., Ainsworth, J., Al-Abadi, E., Avcin, T., Bortey, L., Burnham, J., Ciurtin, C., Hedrich, C. M., Kamphuis, S., Lambert, L., Levy, D. M., Lewandowski, L., Maxwell, N., Morand, E., Özen, S., Pain, C. E., Ravelli, A., Saad Magalhaes, C., Pilkington, C., Schonenberg-Meinema, D., Scott, C., Tullus, K., Beresford, M. W., Goilav, B., Goss, N., Oni, L., Marks, S. D., Smith, E. M.D., Aggarwal, A., Ainsworth, J., Al-Abadi, E., Avcin, T., Bortey, L., Burnham, J., Ciurtin, C., Hedrich, C. M., Kamphuis, S., Lambert, L., Levy, D. M., Lewandowski, L., Maxwell, N., Morand, E., Özen, S., Pain, C. E., Ravelli, A., Saad Magalhaes, C., Pilkington, C., Schonenberg-Meinema, D., Scott, C., Tullus, K., Beresford, M. W., Goilav, B., Goss, N., Oni, L., and Marks, S. D.
- Abstract
Objective: To derive childhood-onset SLE (cSLE) specific remission definitions for future treat-to-target (T2T) trials, observational studies, and clinical practice. Methods: The cSLE International T2T Task Force conducted Delphi surveys exploring paediatric perspectives on adult-onset SLE remission targets. A modified nominal group technique was used to discuss, refine, and agree on the cSLE remission target criteria.Results: The Task Force proposed two definitions of remission: ‘cSLE clinical remission on steroids (cCR)’ and ‘cSLE clinical remission off steroids (cCR-0)’. The common criteria are: (1) Clinical-SLEDAI-2 K = 0; (2) PGA score < 0.5 (0–3 scale); (4) stable antimalarials, immunosuppressive, and biologic therapy (changes due to side-effects, adherence, weight, or when building up to target dose allowed). Criterion (3) in cCR is the prednisolone dose ≤0.1 mg/kg/day (maximum 5 mg/day), whereas in cCR-0 it is zero. Conclusions: cSLE definitions of remission have been proposed, maintaining sufficient alignment with the adult-SLE definition to facilitate life-course research.
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- 2024
8. ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products
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Talarico, R, Ramirez, G, Barreira, S, Cardamone, C, Triggianese, P, Aguilera, S, Andersen, J, Avcin, T, Benistan, K, Bertsias, G, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Callens, S, Carreira, P, Cervera, R, Cutolo, M, Damian, L, Della-Torre, E, Faria, R, Fonseca, J, Galetti, I, Hachulla, E, Iaccarino, L, Jacobsen, S, Khmelinskii, N, Limper, M, Marinello, D, Meyer, A, Moroncini, G, Nagy, G, Olesinska, M, Pamfil, C, Pileckyte, M, Pistello, M, Rednic, S, Richez, C, Romao, V, Schneider, M, Sciascia, S, Scire, C, Simonini, G, Smith, V, Sulli, A, Tani, C, Tas, S, Tincani, A, Vonk, M, Tektonidou, M, Mosca, M, Talarico R., Ramirez G. A., Barreira S. C., Cardamone C., Triggianese P., Aguilera S., Andersen J., Avcin T., Benistan K., Bertsias G., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Callens S., Carreira P. E., Cervera R., Cutolo M., Damian L., Della-Torre E., Faria R., Fonseca J. E., Galetti I., Hachulla E., Iaccarino L., Jacobsen S., Khmelinskii N., Limper M., Marinello D., Meyer A., Moroncini G., Nagy G., Olesinska M., Pamfil C., Pileckyte M., Pistello M., Rednic S., Richez C., Romao V. C., Schneider M., Sciascia S., Scire C. A., Simonini G., Smith V., Sulli A., Tani C., Tas S. W., Tincani A., Vonk M. C., Tektonidou M., Mosca M., Talarico, R, Ramirez, G, Barreira, S, Cardamone, C, Triggianese, P, Aguilera, S, Andersen, J, Avcin, T, Benistan, K, Bertsias, G, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Callens, S, Carreira, P, Cervera, R, Cutolo, M, Damian, L, Della-Torre, E, Faria, R, Fonseca, J, Galetti, I, Hachulla, E, Iaccarino, L, Jacobsen, S, Khmelinskii, N, Limper, M, Marinello, D, Meyer, A, Moroncini, G, Nagy, G, Olesinska, M, Pamfil, C, Pileckyte, M, Pistello, M, Rednic, S, Richez, C, Romao, V, Schneider, M, Sciascia, S, Scire, C, Simonini, G, Smith, V, Sulli, A, Tani, C, Tas, S, Tincani, A, Vonk, M, Tektonidou, M, Mosca, M, Talarico R., Ramirez G. A., Barreira S. C., Cardamone C., Triggianese P., Aguilera S., Andersen J., Avcin T., Benistan K., Bertsias G., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Callens S., Carreira P. E., Cervera R., Cutolo M., Damian L., Della-Torre E., Faria R., Fonseca J. E., Galetti I., Hachulla E., Iaccarino L., Jacobsen S., Khmelinskii N., Limper M., Marinello D., Meyer A., Moroncini G., Nagy G., Olesinska M., Pamfil C., Pileckyte M., Pistello M., Rednic S., Richez C., Romao V. C., Schneider M., Sciascia S., Scire C. A., Simonini G., Smith V., Sulli A., Tani C., Tas S. W., Tincani A., Vonk M. C., Tektonidou M., and Mosca M.
- Abstract
Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient's representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final OP
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- 2023
9. Primary immunodeficiencies in Central and Eastern Europe—the power of networking Report on the activity of the Jeffrey Modell Foundation Centers Network in Central and Eastern Europe
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Sediva, A., Bataneant, M., Belevtsev, M., Blaziene, A., Ciznar, P., Förster-Waldl, E., Kelecic, J., Marodi, J., Naumova, E., Nasrullayeva, G., Ress, K., Serban, M., Sitkaustiene, B., Toth, B., Modell, V., Modell, F., Tenembaum, V., Marković, M., and Avcin, T.
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- 2019
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10. 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
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Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Andersen, J, Arnaud, L, Avcin, T, Marsal Barril, S, Beretta, L, Bombardieri, S, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Corti, P, Costedoat-Chalumeau, N, Davidsone, Z, Doria, A, Fenech, C, Ferraris, A, Fischer-Betz, R, Fonseca, J, Frank, C, Gaglioti, A, Galetti, I, Guimaraes, V, Hachulla, E, Holmner, M, Houssiau, F, Iaccarino, L, Jacobsen, S, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Milas-Ahic, J, Moinzadeh, P, Montecucco, C, Mouthon, L, Muller-Ladner, U, Nagy, G, Patarata, E, Pileckyte, M, Pruunsild, C, Rednic, S, Romao, V, Schneider, M, Scire, C, Smith, V, Sulli, A, Tamirou, F, Tani, C, Taruscio, D, Taulaigo, A, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P, van Laar, J, Vieira, A, de Vries-Bouwstra, J, Zschocke, J, Cutolo, M, Mosca, M, Talarico R., Aguilera S., Alexander T., Amoura Z., Andersen J., Arnaud L., Avcin T., Marsal Barril S., Beretta L., Bombardieri S., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Cannizzo S., Cavagna L., Chaigne B., Cornet A., Corti P., Costedoat-Chalumeau N., Davidsone Z., Doria A., Fenech C., Ferraris A., Fischer-Betz R., Fonseca J. E., Frank C., Gaglioti A., Galetti I., Guimaraes V., Hachulla E., Holmner M., Houssiau F., Iaccarino L., Jacobsen S., Limper M., Malfait F., Mariette X., Marinello D., Martin T., Matthews L., Matucci-Cerinic M., Meyer A., Milas-Ahic J., Moinzadeh P., Montecucco C., Mouthon L., Muller-Ladner U., Nagy G., Patarata E., Pileckyte M., Pruunsild C., Rednic S., Romao V. C., Schneider M., Scire C. A., Smith V., Sulli A., Tamirou F., Tani C., Taruscio D., Taulaigo A. V., Tincani A., Ticciati S., Turchetti G., van Hagen P. M., van Laar J. M., Vieira A., de Vries-Bouwstra J. K., Zschocke J., Cutolo M., Mosca M., Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Andersen, J, Arnaud, L, Avcin, T, Marsal Barril, S, Beretta, L, Bombardieri, S, Bortoluzzi, A, Bouillot, C, Bulina, I, Burmester, G, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Corti, P, Costedoat-Chalumeau, N, Davidsone, Z, Doria, A, Fenech, C, Ferraris, A, Fischer-Betz, R, Fonseca, J, Frank, C, Gaglioti, A, Galetti, I, Guimaraes, V, Hachulla, E, Holmner, M, Houssiau, F, Iaccarino, L, Jacobsen, S, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Milas-Ahic, J, Moinzadeh, P, Montecucco, C, Mouthon, L, Muller-Ladner, U, Nagy, G, Patarata, E, Pileckyte, M, Pruunsild, C, Rednic, S, Romao, V, Schneider, M, Scire, C, Smith, V, Sulli, A, Tamirou, F, Tani, C, Taruscio, D, Taulaigo, A, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P, van Laar, J, Vieira, A, de Vries-Bouwstra, J, Zschocke, J, Cutolo, M, Mosca, M, Talarico R., Aguilera S., Alexander T., Amoura Z., Andersen J., Arnaud L., Avcin T., Marsal Barril S., Beretta L., Bombardieri S., Bortoluzzi A., Bouillot C., Bulina I., Burmester G. R., Cannizzo S., Cavagna L., Chaigne B., Cornet A., Corti P., Costedoat-Chalumeau N., Davidsone Z., Doria A., Fenech C., Ferraris A., Fischer-Betz R., Fonseca J. E., Frank C., Gaglioti A., Galetti I., Guimaraes V., Hachulla E., Holmner M., Houssiau F., Iaccarino L., Jacobsen S., Limper M., Malfait F., Mariette X., Marinello D., Martin T., Matthews L., Matucci-Cerinic M., Meyer A., Milas-Ahic J., Moinzadeh P., Montecucco C., Mouthon L., Muller-Ladner U., Nagy G., Patarata E., Pileckyte M., Pruunsild C., Rednic S., Romao V. C., Schneider M., Scire C. A., Smith V., Sulli A., Tamirou F., Tani C., Taruscio D., Taulaigo A. V., Tincani A., Ticciati S., Turchetti G., van Hagen P. M., van Laar J. M., Vieira A., de Vries-Bouwstra J. K., Zschocke J., Cutolo M., and Mosca M.
- 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
11. POS0139 DIFFUSE JUVENILE SYSTEMIC SCLEROSIS PATIENTS SHOW DISTINCT ORGAN INVOLVEMENT, ANTIBODY PATTERN AND HAVE SIGNIFICANTLY MORE SEVERE DISEASE IN THE LARGEST JSSC COHORT OF THE WORLD. RESULTS FROM THE JUVENILE SCLERODERMA INCEPTION COHORT
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Foeldvari, I., primary, Klotsche, J., additional, Torok, K., additional, Kasapcopur, O., additional, Adrovic, A., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Feldman, B., additional, Sztajnbok, F. R., additional, Antón, J., additional, Stanevicha, V., additional, Johnson, S., additional, Khubchandani, R., additional, Schonenberg, D., additional, Al-Abadi, E., additional, Alexeeva, E., additional, Katsikas, M., additional, Sawhney, S., additional, Smith, V., additional, Appenzeller, S., additional, Avcin, T., additional, Kostik, M., additional, Lehman, T., additional, Malcova, H., additional, Marrani, E., additional, Pain, C., additional, Patwardhan, A., additional, Sifuentes-Giraldo, W. A., additional, Vasquez-Canizares, N., additional, Costa Reis, P., additional, Janarthanan, M., additional, Moll, M., additional, Nemcova, D., additional, Santos, M. J., additional, Abu Al Saoud, S., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Kaiser, D., additional, Kallinich, T., additional, Lazarevic, D., additional, Minden, K., additional, Nielsen, S., additional, Nuruzzaman, F., additional, Opsahl Hetlevik, S., additional, Uziel, Y., additional, and Helmus, N., additional
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- 2023
- Full Text
- View/download PDF
12. POS0141 APPLICATION OF CRISS SCORE, REVISED CRISS SCORE AND RCID SCORE IN PATIENTS WITH JUVENILE SYSTEMIC SCLEROSIS
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Klotsche, J., primary, Foeldvari, I., additional, Torok, K., additional, Del Galdo, F., additional, Furst, D., additional, Kasapcopur, O., additional, Adrovic, A., additional, Feldman, B., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Sztajnbok, F. R., additional, Antón, J., additional, Katsikas, M., additional, Stanevicha, V., additional, Appenzeller, S., additional, Avcin, T., additional, Johnson, S., additional, Kostik, M., additional, Malcova, H., additional, Marrani, E., additional, Sifuentes-Giraldo, W. A., additional, Khubchandani, R., additional, Nemcova, D., additional, Santos, M. J., additional, Schonenberg, D., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Kallinich, T., additional, Lehman, T., additional, Minden, K., additional, Moll, M., additional, Nielsen, S., additional, Patwardhan, A., additional, Smith, V., additional, and Helmus, N., additional
- Published
- 2023
- Full Text
- View/download PDF
13. PReS-endorsed international childhood lupus T2T task force definition of childhood lupus low disease activity state (cLLDAS)
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Smith, E.M.D., primary, Aggarwal, A., additional, Ainsworth, J., additional, Al-Abadi, E., additional, Avcin, T., additional, Bortey, L., additional, Burnham, J., additional, Ciurtin, C., additional, Hedrich, C.M., additional, Kamphuis, S., additional, Lambert, L., additional, Levy, D.M., additional, Lewandowski, L., additional, Maxwell, N., additional, Morand, E., additional, Ozen, S., additional, Pain, C.E., additional, Ravelli, A., additional, Saad Magalhaes, C., additional, Pilkington, C., additional, Schonenberg-Meinema, D., additional, Scott, C., additional, Tullus, K., additional, Beresford, M.W., additional, Goilav, B., additional, Oni, L., additional, and Marks, S., additional
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- 2023
- Full Text
- View/download PDF
14. Application of CRISS score, revised CRISS score and RCID score in patients with Juvenile systemic sclerosis
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Klotsche, J, Foeldvari, I, Torok, K, Del Gado, F, Furst, DE, Kasapcopur, O, Adrovic, A, Feldman, B, Terreri, MT, Sakamoto, AP, Sztajnbok, F, Anton, J, Katsicas, M, Stanevicha, V, Appenzeller, S, Avcin, T, Johnson, S, Kostik, M, Malcova, H, Marrani, E, Sifuentes-Giraldo, WA, Khubchandani, R, Nemcova, D, Santos, MJ, Schonenberg, D, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Eleftheriou, D, Harel, L, Horneff, G, Kallinich, T, Lehman, T, Minden, K, Moll, M, Nielsen, S, Patwardhan, A, Smith, V, Helmus, N, Klotsche, J, Foeldvari, I, Torok, K, Del Gado, F, Furst, DE, Kasapcopur, O, Adrovic, A, Feldman, B, Terreri, MT, Sakamoto, AP, Sztajnbok, F, Anton, J, Katsicas, M, Stanevicha, V, Appenzeller, S, Avcin, T, Johnson, S, Kostik, M, Malcova, H, Marrani, E, Sifuentes-Giraldo, WA, Khubchandani, R, Nemcova, D, Santos, MJ, Schonenberg, D, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Eleftheriou, D, Harel, L, Horneff, G, Kallinich, T, Lehman, T, Minden, K, Moll, M, Nielsen, S, Patwardhan, A, Smith, V, and Helmus, N
- Published
- 2023
15. Diffuse juvenile systemic sclerosis patients show distinct organ involvement, antibody pattern and have significantly more severe disease in the largest jSSc cohort of the world. Results from the juvenile scleroderma inception cohort
- Author
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Foeldvari, I, Klotsche, J, Torok, K, Kasapcopur, O, Adrovic, A, Terreri, MT, Sakamoto, AP, Feldman, B, Sztajnbok, F, Anton, J, Stanevicha, V, Johnson, S, Khubchandani, R, Schonenberg, D, Al-Abadi, E, Alexeeva, E, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Malcova, H, Marrani, E, Pain, C, Patwardhan, A, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Costa Reis, P, Janarthanan, M, Nemcova, D, Santos, MJ, Abu Al-Saoud, S, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Eleftheriou, D, Harel, L, Horneff, G, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nielsen, S, Nuruzzaman, F, Opsahl Hetlevik, S, Uziel, Y, Helmus, N, Foeldvari, I, Klotsche, J, Torok, K, Kasapcopur, O, Adrovic, A, Terreri, MT, Sakamoto, AP, Feldman, B, Sztajnbok, F, Anton, J, Stanevicha, V, Johnson, S, Khubchandani, R, Schonenberg, D, Al-Abadi, E, Alexeeva, E, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Malcova, H, Marrani, E, Pain, C, Patwardhan, A, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Costa Reis, P, Janarthanan, M, Nemcova, D, Santos, MJ, Abu Al-Saoud, S, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Eleftheriou, D, Harel, L, Horneff, G, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nielsen, S, Nuruzzaman, F, Opsahl Hetlevik, S, Uziel, Y, and Helmus, N
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- 2023
16. Is decreased body mass index-2 z score or less correlating with an organ involvement pattern? Results from the juvenile scleroderma inception cohort
- Author
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Foeldvari, I, Klotsche, J, Torok, K, Kasapcopur, O, Adrovic, A, Feldman, B, Sztajnbok, F, Anton, J, Terreri, MT, Sakamoto, AP, Khubchandani, R, Stanevicha, V, Al-Abadi, E, Alexeeva, E, Katsicas, M, Sawhney, S, Schonenberg, D, Smith, V, Appenzeller, S, Avcin, T, Lehman, T, Malcova, H, Marrani, E, Patwardhan, A, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Costa Reis, P, Janarthanan, M, Johnson, S, Kostik, M, Nemcova, D, Pain, C, Santos, MJ, Abu Al-Saoud, S, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Eleftheriou, D, Harel, L, Horneff, G, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nuruzzaman, F, Opsahl Hetlevik, S, Uziel, Y, Helmus, N, Foeldvari, I, Klotsche, J, Torok, K, Kasapcopur, O, Adrovic, A, Feldman, B, Sztajnbok, F, Anton, J, Terreri, MT, Sakamoto, AP, Khubchandani, R, Stanevicha, V, Al-Abadi, E, Alexeeva, E, Katsicas, M, Sawhney, S, Schonenberg, D, Smith, V, Appenzeller, S, Avcin, T, Lehman, T, Malcova, H, Marrani, E, Patwardhan, A, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Costa Reis, P, Janarthanan, M, Johnson, S, Kostik, M, Nemcova, D, Pain, C, Santos, MJ, Abu Al-Saoud, S, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Eleftheriou, D, Harel, L, Horneff, G, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nuruzzaman, F, Opsahl Hetlevik, S, Uziel, Y, and Helmus, N
- Published
- 2023
17. ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products.
- Author
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Talarico, R., Ramirez, G.A., Barreira, S.C., Cardamone, C., Triggianese, P., Aguilera, S., Andersen, J., Avcin, T., Benistan, K., Bertsias, G., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G.R., Callens, S., Carreira, P.E., Cervera, R., Cutolo, M., Damian, L., Della-Torre, E., Faria, R., Fonseca, J.E., Galetti, I., Hachulla, E., Iaccarino, L., Jacobsen, S., Khmelinskii, N., Limper, M., Marinello, D., Meyer, A, Moroncini, G., Nagy, G., Olesinska, M., Pamfil, C., Pileckyte, M., Pistello, M., Rednic, S., Richez, C., Romão, V.C., Schneider, M., Sciascia, S., Scirè, C.A., Simonini, G., Smith, V., Sulli, A., Tani, C., Tas, S.W., Tincani, A., Vonk, M.C., Tektonidou, M., Mosca, M., Talarico, R., Ramirez, G.A., Barreira, S.C., Cardamone, C., Triggianese, P., Aguilera, S., Andersen, J., Avcin, T., Benistan, K., Bertsias, G., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G.R., Callens, S., Carreira, P.E., Cervera, R., Cutolo, M., Damian, L., Della-Torre, E., Faria, R., Fonseca, J.E., Galetti, I., Hachulla, E., Iaccarino, L., Jacobsen, S., Khmelinskii, N., Limper, M., Marinello, D., Meyer, A, Moroncini, G., Nagy, G., Olesinska, M., Pamfil, C., Pileckyte, M., Pistello, M., Rednic, S., Richez, C., Romão, V.C., Schneider, M., Sciascia, S., Scirè, C.A., Simonini, G., Smith, V., Sulli, A., Tani, C., Tas, S.W., Tincani, A., Vonk, M.C., Tektonidou, M., and Mosca, M.
- Abstract
Item does not contain fulltext, Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient's representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final OP
- Published
- 2023
18. ERN ReCONNET points to consider for treating patients living with autoimmune rheumatic diseases with antiviral therapies and anti-SARS-CoV-2 antibody products
- Author
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Talarico, Rosaria R., Ramirez, G. A., Barreira, S. C., Cardamone, C., Triggianese, P., Aguilera, S., Andersen, J., Avcin, T., Benistan, K., Bertsias, G., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Callens, S., Carreira, P. E., Cervera, R., Cutolo, M., Damian, L., Torre, E. Della, Faria, R., Fonseca, J. E., Galetti, I., Hachulla, E., Iaccarino, L., Jacobsen, S., Khmelinskii, N., Limper, M., Marinello, D., Meyer, A., Moroncini, G., Nagy, G., Olesinska, M., Pamfil, C., Pileckyte, M., Pistello, M., Rednic, S., Richez, C., Romão, V. C., Schneider, M., Sciascia, S., Scirè, C. A., Simonini, G., Smith, V., Sulli, A., Tani, C., Tas, S. W., Tincani, A., Vonk, M. C., Tektonidou, M., Mosca, M., Talarico, Rosaria R., Ramirez, G. A., Barreira, S. C., Cardamone, C., Triggianese, P., Aguilera, S., Andersen, J., Avcin, T., Benistan, K., Bertsias, G., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Callens, S., Carreira, P. E., Cervera, R., Cutolo, M., Damian, L., Torre, E. Della, Faria, R., Fonseca, J. E., Galetti, I., Hachulla, E., Iaccarino, L., Jacobsen, S., Khmelinskii, N., Limper, M., Marinello, D., Meyer, A., Moroncini, G., Nagy, G., Olesinska, M., Pamfil, C., Pileckyte, M., Pistello, M., Rednic, S., Richez, C., Romão, V. C., Schneider, M., Sciascia, S., Scirè, C. A., Simonini, G., Smith, V., Sulli, A., Tani, C., Tas, S. W., Tincani, A., Vonk, M. C., Tektonidou, M., and Mosca, M.
- Abstract
Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient’s representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final OP, Recent studies have shown that people who are immunocompromised may inadvertently play a role in spurring the mutations of the virus that create new variants. This is because some immunocompromised individuals remain at risk of getting COVID-19 despite vaccination, experience more severe disease, are susceptible to being chronically infected and remain contagious for longer if they become infected and considering that immunocompromised individuals represent approximately 2% of the overall population, this aspect should be carefully considered. So far, some autoimmune rheumatic disease (ARD) patients with COVID-19 have been treated with antiviral therapies or anti-SARS-CoV-2 antibody products. However, there is no homogeneous approach to these treatment strategies. This issue was addressed within the European Reference Network (ERN) on Rare and Complex Connective Tissue and Musculoskeletal Diseases (ReCONNET) in a discussion among experts and patient's representatives in the context of the rare and complex connective tissue diseases (rCTDs) covered by the Network. ERN ReCONNET is one of the 24 ERNs launched by the European Commission in 2017 with the aim of tackling low prevalence and rare diseases that require highly specialised treatment and promoting concentration of knowledge and resources through virtual networks involving healthcare providers (HCPs) across the European Union (EU). Considering the urgent need to provide guidance not only to the rCTDs community, but also to the whole ARDs community, a multidisciplinary Task Force, including expert clinicians and European Patient Advocacy Group (ePAG) Advocates, was created in the framework of ERN ReCONNET with the aim of developing overarching principles (OP) and points-to-consider (PtC) on a homogenous approach to treat immunocompromised patients with ARDs (with a particular focus on CTDs) affected by COVID-19 using antiviral therapies and anti-SARS-CoV-2 antibody products. The present work reports the final
- Published
- 2023
19. Correction to: Primary immunodeficiencies in Central and Eastern Europe—the power of networking Report on the activity of the Jeffrey Modell Foundation Centers Network in Central and Eastern Europe
- Author
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Sediva, A., Bataneant, M., Belevtsev, M., Blaziene, A., Ciznar, P., Förster-Waldl, E., Kelecic, J., Marodi, J., Naumova, E., Nasrullayeva, G., Ress, K., Serban, M., Sitkauskiene, B., Toth, B., Modell, V., Modell, F., Tenembaum, V., Marković, M., and Avcin, T.
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- 2020
- Full Text
- View/download PDF
20. Diffuse juvenile systemic sclerosis patients show distinct organ involvement and have more severe disease in the largest jSSc cohort of the world. Results from the the juvenile scleroderma inception cohort
- Author
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Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Sakamoto, AP, Feldman, B, Sztajnbok, F, Stanevicha, V, Anton, J, Johnson, S, Khubchandani, R, Alexeeva, E, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Malcova, H, Marrani, E, Pain, C, Schonenberg, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Costa Reis, P, Janarthanan, M, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, Abu Al-Saoud, S, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Cimaz, R, Eleftheriou, D, Harel, L, Horneff, G, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nuruzzaman, F, Opsahl Hetlevik, S, Uziel, Y, Helmus, N, Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Sakamoto, AP, Feldman, B, Sztajnbok, F, Stanevicha, V, Anton, J, Johnson, S, Khubchandani, R, Alexeeva, E, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Malcova, H, Marrani, E, Pain, C, Schonenberg, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Costa Reis, P, Janarthanan, M, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, Abu Al-Saoud, S, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Cimaz, R, Eleftheriou, D, Harel, L, Horneff, G, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nuruzzaman, F, Opsahl Hetlevik, S, Uziel, Y, and Helmus, N
- Published
- 2022
21. Juvenile systemic sclerosis treatment practices in an international cohort and comparison to recent SHARE consensus guidelines
- Author
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Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Sakamoto, AP, Feldman, B, Anton, J, Sztajnbok, F, Stanevicha, V, Appenzeller, S, Avcin, T, Johnson, S, Khubchandani, R, Kostik, M, Marrani, E, Sifuentes-Giraldo, WA, Nemcova, D, Santos, MJ, Schonenberg, D, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Cimaz, R, Eleftheriou, D, Harel, L, Horneff, G, Janarthanan, M, Kallinich, T, Lehman, T, Moll, M, Nuruzzaman, F, Patwardhan, A, Smith, V, Helmus, N, Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Sakamoto, AP, Feldman, B, Anton, J, Sztajnbok, F, Stanevicha, V, Appenzeller, S, Avcin, T, Johnson, S, Khubchandani, R, Kostik, M, Marrani, E, Sifuentes-Giraldo, WA, Nemcova, D, Santos, MJ, Schonenberg, D, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Cimaz, R, Eleftheriou, D, Harel, L, Horneff, G, Janarthanan, M, Kallinich, T, Lehman, T, Moll, M, Nuruzzaman, F, Patwardhan, A, Smith, V, and Helmus, N
- Published
- 2022
22. Patient and physician reported outcomes of juvenile systemic sclerosis patients significantly improve over 12 months observation period in the juvenile systemic scleroderma inception cohort
- Author
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Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Feldman, B, Anton, J, Katsicas, M, Stanevicha, V, Sztajnbok, F, Appenzeller, S, Avcin, T, Kostik, M, Marrani, E, Sifuentes-Giraldo, WA, Johnson, S, Khubchandani, R, Nemcova, D, Santos, MJ, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Cimaz, R, Eleftheriou, D, Harel, L, Horneff, G, Janarthanan, M, Kallinich, T, Minden, K, Moll, M, Nielsen, S, Patwardhan, A, Schonenberg, D, Smith, V, Helmus, N, Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Feldman, B, Anton, J, Katsicas, M, Stanevicha, V, Sztajnbok, F, Appenzeller, S, Avcin, T, Kostik, M, Marrani, E, Sifuentes-Giraldo, WA, Johnson, S, Khubchandani, R, Nemcova, D, Santos, MJ, Battagliotti, C, Berntson, L, Bica, B, Brunner, J, Cimaz, R, Eleftheriou, D, Harel, L, Horneff, G, Janarthanan, M, Kallinich, T, Minden, K, Moll, M, Nielsen, S, Patwardhan, A, Schonenberg, D, Smith, V, and Helmus, N
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- 2022
23. Clinical characteristics of juvenile onset systemic sclerosis patients from the juvenile scleroderma inception cohort compared to adult age juvenile-onset patients from EUSTAR. Are these differences suggesting risk for mortality?
- Author
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Foeldvari, I, Klotsche, J, Carreira, PE, Kasapcopur, O, Adrovic, A, Torok, K, Airò, P, Iannone, F, Allanore, Y, Balbir-Gurman, A, Schmeiser, T, Sztajnbok, F, Terreri, MT, Stanevicha, V, Anton, J, Feldman, B, Khubchandani, R, Alexeeva, E, Johnson, S, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Campochiaro, C, De Vries-Bouwstra, J, Kostik, M, Lehman, T, Marrani, E, Schonenberg, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Janarthanan, M, Malcova, H, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, Seskute, G, Truchetet, ME, Veale, D, Hoffmann-Vold, AM, Gabrielli, A, Distler, O, Foeldvari, I, Klotsche, J, Carreira, PE, Kasapcopur, O, Adrovic, A, Torok, K, Airò, P, Iannone, F, Allanore, Y, Balbir-Gurman, A, Schmeiser, T, Sztajnbok, F, Terreri, MT, Stanevicha, V, Anton, J, Feldman, B, Khubchandani, R, Alexeeva, E, Johnson, S, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Campochiaro, C, De Vries-Bouwstra, J, Kostik, M, Lehman, T, Marrani, E, Schonenberg, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Janarthanan, M, Malcova, H, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, Seskute, G, Truchetet, ME, Veale, D, Hoffmann-Vold, AM, Gabrielli, A, and Distler, O
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- 2022
24. 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
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Talarico, R., Aguilera, S., Alexander, T., Amoura, Z., Andersen, J., Arnaud, L., Avcin, T., Marsal Barril, S., Beretta, L., Bombardieri, S., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Cannizzo, S., Cavagna, L., Chaigne, B., Cornet, A., Corti, P., Costedoat-Chalumeau, N., Dāvidsone, Z., Doria, A., Fenech, C., Ferraris, A., Fischer-Betz, R., Fonseca, J. E., Frank, C., Gaglioti, A., Galetti, I., Guimarães, V., Hachulla, E., Holmner, M., Houssiau, F., Iaccarino, L., Jacobsen, S., Limper, M., Malfait, F., Mariette, X., Marinello, D., Martin, T., Matthews, L., Matucci-Cerinic, M., Meyer, A., Milas-Ahić, J., Moinzadeh, P., Montecucco, C., Mouthon, L., Müller-Ladner, U., Nagy, G., Patarata, E., Pileckyte, M., Pruunsild, C., Rednic, S., Romão, V. C., Schneider, M., Scirè, C. A., Smith, V., Sulli, A., Tamirou, F., Tani, C., Taruscio, D., Taulaigo, A. V., Tincani, A., Ticciati, S., Turchetti, G., van Hagen, P. M., van Laar, J. M., Vieira, A., de Vries-Bouwstra, J. K., Zschocke, J., Cutolo, M., Mosca, Marta, Talarico, R., Aguilera, S., Alexander, T., Amoura, Z., Andersen, J., Arnaud, L., Avcin, T., Marsal Barril, S., Beretta, L., Bombardieri, S., Bortoluzzi, A., Bouillot, C., Bulina, I., Burmester, G. R., Cannizzo, S., Cavagna, L., Chaigne, B., Cornet, A., Corti, P., Costedoat-Chalumeau, N., Dāvidsone, Z., Doria, A., Fenech, C., Ferraris, A., Fischer-Betz, R., Fonseca, J. E., Frank, C., Gaglioti, A., Galetti, I., Guimarães, V., Hachulla, E., Holmner, M., Houssiau, F., Iaccarino, L., Jacobsen, S., Limper, M., Malfait, F., Mariette, X., Marinello, D., Martin, T., Matthews, L., Matucci-Cerinic, M., Meyer, A., Milas-Ahić, J., Moinzadeh, P., Montecucco, C., Mouthon, L., Müller-Ladner, U., Nagy, G., Patarata, E., Pileckyte, M., Pruunsild, C., Rednic, S., Romão, V. C., Schneider, M., Scirè, C. A., Smith, V., Sulli, A., Tamirou, F., Tani, C., Taruscio, D., Taulaigo, A. V., Tincani, A., Ticciati, S., Turchetti, G., van Hagen, P. M., van Laar, J. M., Vieira, A., de Vries-Bouwstra, J. K., Zschocke, J., Cutolo, M., 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.
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- 2022
25. POS0172 DIFFUSE JUVENILE SYSTEMIC SCLEROSIS PATIENTS SHOW DISTINCT ORGAN INVOLVEMENT AND HAVE MORE SEVERE DISEASE IN THE LARGEST jSSc COHORT OF THE WORLD. RESULTS FROM THE THE JUVENILE SCLERODERMA INCEPTION COHORT. www.juvenile-scleroderma.com
- Author
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Foeldvari, I., primary, Klotsche, J., additional, Kasapcopur, O., additional, Adrovic, A., additional, Torok, K., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Feldman, B., additional, Sztajnbok, F. R., additional, Stanevicha, V., additional, Anton, J., additional, Johnson, S., additional, Khubchandani, R., additional, Alexeeva, E., additional, Katsikas, M., additional, Sawhney, S., additional, Smith, V., additional, Appenzeller, S., additional, Avcin, T., additional, Kostik, M., additional, Lehman, T., additional, Malcova, H., additional, Marrani, E., additional, Pain, C., additional, Schonenberg, D., additional, Sifuentes-Giraldo, W. A., additional, Vasquez-Canizares, N., additional, Costa Reis, P., additional, Janarthanan, M., additional, Moll, M., additional, Nemcova, D., additional, Patwardhan, A., additional, Santos, M. J., additional, Abu Al Saoud, S., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Cimaz, R., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Kaiser, D., additional, Kallinich, T., additional, Lazarevic, D., additional, Minden, K., additional, Nielsen, S., additional, Nuruzzaman, F., additional, Opsahl Hetlevik, S., additional, Uziel, Y., additional, and Helmus, N., additional
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- 2022
- Full Text
- View/download PDF
26. AB1236 CLINICAL CHARACTERISTICS OF JUVENILE ONSET SYSTEMIC SCLEROSIS PATIENTS FROM THE JUVENILE SCLERODERMA INCEPTION COHORT COMPARED TO ADULT AGE JUVENILE-ONSET PATIENTS FROM EUSTAR. ARE THESE DIFFERENCES SUGGESTING RISK FOR MORTALITY?
- Author
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Foeldvari, I., primary, Klotsche, J., additional, Carreira, P., additional, Kasapcopur, O., additional, Torok, K., additional, Airò, P., additional, Iannone, F., additional, Allanore, Y., additional, Balbir-Gurman, A., additional, Schmeiser, T., additional, Sztajnbok, F. R., additional, Terreri, M. T., additional, Stanevicha, V., additional, Anton, J., additional, Feldman, B., additional, Khubchandani, R., additional, Alexeeva, E., additional, Johnson, S., additional, Katsikas, M., additional, Sawhney, S., additional, Smith, V., additional, Appenzeller, S., additional, Avcin, T., additional, Campochiaro, C., additional, De Vries-Bouwstra, J., additional, Kostik, M., additional, Lehman, T., additional, Marrani, E., additional, Schonenberg, D., additional, Sifuentes-Giraldo, W. A., additional, Vasquez-Canizares, N., additional, Janarthanan, M., additional, Malcova, H., additional, Moll, M., additional, Nemcova, D., additional, Patwardhan, A., additional, Santos, M. J., additional, Seskute, G., additional, Truchetet, M. E., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Cimaz, R., additional, Costa Reis, P., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Kaiser, D., additional, Kallinich, T., additional, Lazarevic, D., additional, Minden, K., additional, Nielsen, S., additional, Nuruzzaman, F., additional, Opsahl Hetlevik, S., additional, Uziel, Y., additional, Veale, D., additional, Hoffmann-Vold, A. M., additional, Gabrielli, A., additional, and Distler, O., additional
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- 2022
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27. POS1302 PATIENT AND PHYSICIAN REPORTED OUTCOMES OF JUVENILE SYSTEMIC SCLEROSIS PATIENTS SIGNIFICANTLY IMPROVE OVER 12 MONTHS OBSERVATION PERIOD IN THE JUVENILE SYSTEMIC SCLERODERMA INCEPTION COHORT. www.juvenile-scleroderma.com
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Foeldvari, I., primary, Klotsche, J., additional, Kasapcopur, O., additional, Adrovic, A., additional, Torok, K., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Feldman, B., additional, Anton, J., additional, Katsikas, M., additional, Stanevicha, V., additional, Sztajnbok, F. R., additional, Appenzeller, S., additional, Avcin, T., additional, Kostik, M., additional, Marrani, E., additional, Sifuentes-Giraldo, W. A., additional, Johnson, S., additional, Khubchandani, R., additional, Nemcova, D., additional, Santos, M. J., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Cimaz, R., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Janarthanan, M., additional, Kallinich, T., additional, Minden, K., additional, Moll, M., additional, Nielsen, S., additional, Patwardhan, A., additional, Schonenberg, D., additional, Smith, V., additional, and Helmus, N., additional
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- 2022
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28. AB1144 COGNITIVE AND PSYCHOSOCIAL OUTCOME IN CHILDREN WITH MULTISYSTEM INFLAMMATORY SYNDROME FOLLOWING SARS-CoV-2 INFECTION
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Gosar, D., primary, Zajc Avramovič, M., additional, Emersic, N., additional, Šušterič, M., additional, Šömen, M. M., additional, Osredkar, D., additional, and Avcin, T., additional
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- 2022
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29. POS1299 JUVENILE SYSTEMIC SCLEROSIS TREATMENT PRACTICES IN AN INTERNATIONAL COHORT AND COMPARISON TO RECENT SHARE CONSENSUS GUIDELINES.
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Foeldvari, I., primary, Torok, K., additional, Kasapcopur, O., additional, Adrovic, A., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Feldman, B., additional, Anton, J., additional, Sztajnbok, F. R., additional, Stanevicha, V., additional, Appenzeller, S., additional, Avcin, T., additional, Johnson, S., additional, Khubchandani, R., additional, Kostik, M., additional, Marrani, E., additional, Sifuentes-Giraldo, W. A., additional, Nemcova, D., additional, Santos, M. J., additional, Schonenberg, D., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Cimaz, R., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Janarthanan, M., additional, Kallinich, T., additional, Lehman, T., additional, Moll, M., additional, Nuruzzaman, F., additional, Patwardhan, A., additional, Smith, V., additional, and Helmus, N., additional
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- 2022
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30. OP0219 HIGH INCIDENCE OF MIS-C AND OTHER AUTOIMMUNE DISEASES AFTER SARS-COV-2 INFECTION COMPARED TO COVID-19 VACCINATION IN PEDIATRIC POPULATION FROM SOUTH CENTRAL EUROPE
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Bizjak, M., primary, Emersic, N., additional, Zajc Avramovič, M., additional, Vesel Tajnšek, T., additional, Markelj, G., additional, Della Paolera, S., additional, Conversano, E., additional, Berce, V., additional, Toplak, N., additional, Taddio, A., additional, and Avcin, T., additional
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- 2022
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31. POS0169 OPEN-LABEL, LONG-TERM (10-YEAR) STUDY OF THE SAFETY OF ETANERCEPT IN CHILDREN AND YOUNG ADULTS WITH EXTENDED OLIGOARTICULAR, ENTHESITIS-RELATED, OR PSORIATIC JUVENILE IDIOPATHIC ARTHRITIS
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Vojinovic, J., primary, Dehoorne, J., additional, Panaviene, V., additional, Susic, G., additional, Horneff, G., additional, Stanevicha, V., additional, Kobusinska, K., additional, Żuber, Z., additional, Dobrzyniecka, B., additional, Akikusa, J., additional, Avcin, T., additional, Martini, A., additional, Borlenghi, C., additional, Arthur, E., additional, Tatulych, S. Y., additional, Zang, C., additional, Vlahos, B., additional, and Ruperto, N., additional
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- 2022
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32. POS1457 ANALYSIS OF WORLDWIDE RHEUMATOLOGY POSTGRADUATE TRAINING CURRICULA: A MAPPING EXERCISE TO INFORM THE DEVELOPMENT OF EULAR STANDARDS FOR THE TRAINING OF EUROPEAN RHEUMATOLOGISTS
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Alunno, A., primary, Avcin, T., additional, Haines, C., additional, Sivera, F., additional, Ramiro, S., additional, and Edwards, C. J., additional
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- 2022
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33. POS1293 TEN-YEAR EFFICACY DATA FROM THE CLIPPER STUDIES: OPEN-LABEL, LONG-TERM ETANERCEPT TREATMENT IN CHILDREN AND YOUNG ADULTS WITH EXTENDED OLIGOARTICULAR, ENTHESITIS-RELATED, OR PSORIATIC JUVENILE IDIOPATHIC ARTHRITIS
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Vojinovic, J., primary, Dehoorne, J., additional, Panaviene, V., additional, Susic, G., additional, Horneff, G., additional, Stanevicha, V., additional, Kobusinska, K., additional, Żuber, Z., additional, Dobrzyniecka, B., additional, Akikusa, J., additional, Avcin, T., additional, Martini, A., additional, Borlenghi, C., additional, Arthur, E., additional, Tatulych, S. Y., additional, Zang, C., additional, Tsekouras, V., additional, Vlahos, B., additional, and Ruperto, N., additional
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- 2022
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34. Patients with juvenile systemic sclerosis have a distinct pattern of organ involvement. Results from thejuvenile systemic sclerosis inception cohort
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Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Sakamoto, AP, Feldman, B, Stanevicha, V, Anton, J, Sztajnbok, F, Khubchandani, R, Alexeeva, E, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Marrani, E, Schonenberg, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Janarthanan, M, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, and Helmus, N
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ddc: 610 ,610 Medical sciences ,Medicine - Abstract
Introduction: Juvenile systemic sclerosis (jSSc) is a rare disease with a prevalence of around 3 in 1,000,000 children. To better capture the clinical manifestations of jSSc the juvenile systemic sclerosis inception cohort (jSScC, [link:https://www.juvenile-scleroderma.com/*https://www.juvenile-scleroderma.com/])[for full text, please go to the a.m. URL], Deutscher Rheumatologiekongress 2021, 49. Kongress der Deutschen Gesellschaft für Rheumatologie (DGRh), 35. Jahrestagung der Deutschen Gesellschaft für Orthopädische Rheumatologie (DGORh), Wissenschaftliche Herbsttagung der Gesellschaft für Kinder- und Jugendrheumatologie (GKJR)
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- 2021
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35. Undifferentiated connective tissue disease: State of the art on clinical practice guidelines
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Antunes, M, Scire, C, Talarico, R, Alexander, T, Avcin, T, Belocchi, C, Doria, A, Franceschini, F, Galetti, I, Govoni, M, Hachulla, E, Launay, D, Lepri, G, Macieira, C, Matucci-Cerinic, M, Montecucco, C, Moraes-Fontes, M, Mouthon, L, Paolino, S, Ramoni, V, Tani, C, Tas, S, Tincani, A, Van Vollenhoven, R, Zen, M, Fonseca, J, Bombardieri, S, Schneider, M, Smith, V, Cutolo, M, Mosca, M, Beretta, L, Antunes M., Scire C. A., Talarico R., Alexander T., Avcin T., Belocchi C., Doria A., Franceschini F., Galetti I., Govoni M., Hachulla E., Launay D., Lepri G., Macieira C., Matucci-Cerinic M., Montecucco C. M., Moraes-Fontes M. F., Mouthon L., Paolino S., Ramoni V., Tani C., Tas S. W., Tincani A., Van Vollenhoven R., Zen M., Fonseca J., Bombardieri S., Fonseca J. E., Schneider M., Smith V., Cutolo M., Mosca M., Beretta L., Antunes, M, Scire, C, Talarico, R, Alexander, T, Avcin, T, Belocchi, C, Doria, A, Franceschini, F, Galetti, I, Govoni, M, Hachulla, E, Launay, D, Lepri, G, Macieira, C, Matucci-Cerinic, M, Montecucco, C, Moraes-Fontes, M, Mouthon, L, Paolino, S, Ramoni, V, Tani, C, Tas, S, Tincani, A, Van Vollenhoven, R, Zen, M, Fonseca, J, Bombardieri, S, Schneider, M, Smith, V, Cutolo, M, Mosca, M, Beretta, L, Antunes M., Scire C. A., Talarico R., Alexander T., Avcin T., Belocchi C., Doria A., Franceschini F., Galetti I., Govoni M., Hachulla E., Launay D., Lepri G., Macieira C., Matucci-Cerinic M., Montecucco C. M., Moraes-Fontes M. F., Mouthon L., Paolino S., Ramoni V., Tani C., Tas S. W., Tincani A., Van Vollenhoven R., Zen M., Fonseca J., Bombardieri S., Fonseca J. E., Schneider M., Smith V., Cutolo M., Mosca M., and Beretta L.
- Abstract
The term a € undifferentiated connective tissue disease' (UCTD) is generally used to describe clinical entities characterised by clinical and serological manifestations of systemic autoimmune diseases but not fulfilling the criteria for defined connective tissue diseases (CTDs). In this narrative review, we summarise the results of a systematic literature research, which was performed as part of the ERN ReCONNET project, aimed at evaluating existing clinical practice guidelines (CPGs) or recommendations. No specific CPG on UCTD were found, potential areas of intervention are absence of a consensus definition of UCTD, need for specific monitoring and therapeutic protocols, stratification of UCTD based on the risk of developing a defined CTD and preventive measure for the future development of a more severe condition. Patients feel uncertainty regarding the name of the disease and feel the need of a better education and understanding of these conditions and its possible changes over time.
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- 2019
36. Idiopathic inflammatory myopathies: Narrative review of unmet needs in clinical practice guidelines
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Meyer, A, Scire, C, Talarico, R, Alexander, T, Amoura, Z, Avcin, T, Barsotti, S, Beretta, L, Blagojevic, J, Burmester, G, Cavazzana, I, Cherrin, P, Damian, L, Doria, A, Fonseca, J, Furini, F, Galetti, I, Houssiau, F, Krieg, T, Maddalena, L, Launay, D, Campanilho-Marques, R, Martin, T, Matucci-Cerinic, M, Moinzadeh, P, Montecucco, C, Moraes-Fontes, M, Mouthon, L, Neri, R, Paolino, S, Piette, Y, Rednic, S, Tamirou, F, Tincani, A, Toplak, N, Bombardieri, S, Hachulla, E, Mueller-Ladner, U, Schneider, M, Smith, V, Vieira, A, Cutolo, M, Mosca, M, Cavagna, L, Meyer A., Scire C. A., Talarico R., Alexander T., Amoura Z., Avcin T., Barsotti S., Beretta L., Blagojevic J., Burmester G., Cavazzana I., Cherrin P., Damian L., Doria A., Fonseca J. E., Furini F., Galetti I., Houssiau F., Krieg T., Maddalena L., Launay D., Campanilho-Marques R., Martin T., Matucci-Cerinic M., Moinzadeh P., Montecucco C., Moraes-Fontes M. F., Mouthon L., Neri R., Paolino S., Piette Y., Rednic S., Tamirou F., Tincani A., Toplak N., Bombardieri S., Hachulla E., Mueller-Ladner U., Schneider M., Smith V., Vieira A., Cutolo M., Mosca M., Cavagna L., Meyer, A, Scire, C, Talarico, R, Alexander, T, Amoura, Z, Avcin, T, Barsotti, S, Beretta, L, Blagojevic, J, Burmester, G, Cavazzana, I, Cherrin, P, Damian, L, Doria, A, Fonseca, J, Furini, F, Galetti, I, Houssiau, F, Krieg, T, Maddalena, L, Launay, D, Campanilho-Marques, R, Martin, T, Matucci-Cerinic, M, Moinzadeh, P, Montecucco, C, Moraes-Fontes, M, Mouthon, L, Neri, R, Paolino, S, Piette, Y, Rednic, S, Tamirou, F, Tincani, A, Toplak, N, Bombardieri, S, Hachulla, E, Mueller-Ladner, U, Schneider, M, Smith, V, Vieira, A, Cutolo, M, Mosca, M, Cavagna, L, Meyer A., Scire C. A., Talarico R., Alexander T., Amoura Z., Avcin T., Barsotti S., Beretta L., Blagojevic J., Burmester G., Cavazzana I., Cherrin P., Damian L., Doria A., Fonseca J. E., Furini F., Galetti I., Houssiau F., Krieg T., Maddalena L., Launay D., Campanilho-Marques R., Martin T., Matucci-Cerinic M., Moinzadeh P., Montecucco C., Moraes-Fontes M. F., Mouthon L., Neri R., Paolino S., Piette Y., Rednic S., Tamirou F., Tincani A., Toplak N., Bombardieri S., Hachulla E., Mueller-Ladner U., Schneider M., Smith V., Vieira A., Cutolo M., Mosca M., and Cavagna L.
- 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.
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- 2019
37. Opportunistic infections in immunosuppressed patients with juvenile idiopathic arthritis: analysis by the Pharmachild Safety Adjudication Committee
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Giancane G1, Swart JF2, Castagnola E3, Groll AH4, Horneff G5, 6, Huppertz HI7, Lovell DJ8, Wolfs T2, Herlin T9, Dolezalova P10, Sanner H11, Susic G13, Sztajnbok F14, Maritsi D15, Constantin T16, Vargova V17, Sawhney S18, Rygg M19, K Oliveira S21, Cattalini M22, Bovis F1, Bagnasco F1, Pistorio A23, Martini A24, Wulffraat N2, Ruperto N25, Paediatric Rheumatology International Trials Organisation (PRINTO). Cuttica R, Garay SM, Brunner J, Emminger W, Appenzeller S, Len C, Saad Magalhaes C, Telcharova-Mihaylovska A, Harjacek M, Jelusic M, Estmann A, Nielsen S, Herrera Mora C, Gervais E, Koné-Paut I, Quartier P, Foeldvari I, Horneff G, Lutz T, Minden K, Tzaribachev N, Trachana M, Tsitsami E, Vougiouka O, Orban I, Harel L, Hashkes P, Uziel Y, Cimaz R, Civino A, Consolini R, D'Angelo G, De Benedetti F, Filocamo G, Fueri E, Gallizzi R, Maggio MC, Magnolia MG, Miniaci A, Montin D, Olivieri A. N., Pastore S, Rigante D, Zulian F, Rumba-Rozenfelde I, Stanevicha V, Panaviene V, Rodriguez Lozano AL, Rubio-Perez N, Vega Cornejo G, Hoppenreijs E, Kamphuis S, Flato B, Nordal EB, Abdwani R, Miraval T, Paz Gastanaga ME, Smolewska E, Ailioaie C, Cochino AV, Laday M, Lazar C, Alexeeva E, Chasnyk V, Keltsev V, Suwairi WMS, Vijatov-Djuric G, Vojinovic J, Arkachaisri T, Koskova E, Avcin T, Ally M, Van Rensburg CJ, Louw I, Lopez JA, Boteanu AL, Calvo Penades I, De Inocencio J, Mesa-Del-Castillo P, Moreno E, Remesal A, Hofer M, Gok F, Ozen S, Ramanan A, Pallotti C, Villa L., Giancane, G1, Swart, Jf2, Castagnola, E3, Groll, Ah4, Horneff, G5, Huppertz, Hi7, Lovell, Dj8, Wolfs, T2, Herlin, T9, Dolezalova, P10, Sanner, H11, Susic, G13, Sztajnbok, F14, Maritsi, D15, Constantin, T16, Vargova, V17, Sawhney, S18, Rygg, M19, K Oliveira, S21, Cattalini, M22, Bovis, F1, Bagnasco, F1, Pistorio, A23, Martini, A24, Wulffraat, N2, Ruperto, N25, Paediatric Rheumatology International Trials Organisation (PRINTO)., Cuttica R, Garay, Sm, Brunner, J, Emminger, W, Appenzeller, S, Len, C, Saad Magalhaes, C, Telcharova-Mihaylovska, A, Harjacek, M, Jelusic, M, Estmann, A, Nielsen, S, Herrera Mora, C, Gervais, E, Koné-Paut, I, Quartier, P, Foeldvari, I, Horneff, G, Lutz, T, Minden, K, Tzaribachev, N, Trachana, M, Tsitsami, E, Vougiouka, O, Orban, I, Harel, L, Hashkes, P, Uziel, Y, Cimaz, R, Civino, A, Consolini, R, D'Angelo, G, De Benedetti, F, Filocamo, G, Fueri, E, Gallizzi, R, Maggio, Mc, Magnolia, Mg, Miniaci, A, Montin, D, Olivieri, A. N., Pastore, S, Rigante, D, Zulian, F, Rumba-Rozenfelde, I, Stanevicha, V, Panaviene, V, Rodriguez Lozano, Al, Rubio-Perez, N, Vega Cornejo, G, Hoppenreijs, E, Kamphuis, S, Flato, B, Nordal, Eb, Abdwani, R, Miraval, T, Paz Gastanaga, Me, Smolewska, E, Ailioaie, C, Cochino, Av, Laday, M, Lazar, C, Alexeeva, E, Chasnyk, V, Keltsev, V, Suwairi, Wm, Vijatov-Djuric, G, Vojinovic, J, Arkachaisri, T, Koskova, E, Avcin, T, Ally, M, Van Rensburg, Cj, Louw, I, Lopez, Ja, Boteanu, Al, Calvo Penades, I, De Inocencio, J, Mesa-Del-Castillo, P, Moreno, E, Remesal, A, Hofer, M, Gok, F, Ozen, S, Ramanan, A, Pallotti, C, Villa, L., Giancane, Gabriella, Swart, Joost F, Castagnola, Elio, Groll, Andreas H, Horneff, Gerd, Huppertz, Hans-Iko, Lovell, Daniel J, Wolfs, Tom, Herlin, Troel, Dolezalova, Pavla, Sanner, Helga, Susic, Gordana, Sztajnbok, Flavio, Maritsi, Despoina, Constantin, Tama, Vargova, Veronika, Sawhney, Sujata, Rygg, Marite, K Oliveira, Sheila, Cattalini, Marco, Bovis, Francesca, Bagnasco, Francesca, Pistorio, Angela, Martini, Alberto, Wulffraat, Nico, Ruperto, Nicolino, Cuttica, Ruben, Garay, Stella Mari, 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, Thoma, 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, and Pediatrics
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Male ,lcsh:Diseases of the musculoskeletal system ,Biologic ,Paediatrics: 760 [VDP] ,Artritis infecciosa ,MedDRA ,Infants malalts ,Arthritis ,Severity of Illness Index ,Hospital patients ,Cohort Studies ,Pharmacovigilance ,0302 clinical medicine ,030212 general & internal medicine ,Registries ,Child ,Biologics ,Immunosuppressive therapy ,Infections ,Juvenile idiopathic arthritis ,Opportunistic ,biologics ,immunosuppressive therapy ,infections ,juvenile idiopathic arthritis ,opportunistic ,Barneleddgikt ,3. Good health ,Settore MED/38 - PEDIATRIA GENERALE E SPECIALISTICA ,Antirheumatic Agents ,Child, Preschool ,Cohort ,Pediatric Infectious Disease ,Female ,Infection ,Research Article ,medicine.medical_specialty ,Tuberculosis ,juvenil idiopathic arthritis ,Opportunistic Infections ,Herpes Zoster ,03 medical and health sciences ,Immunocompromised Host ,Juvenile idiopathic arthriti ,Internal medicine ,medicine ,Humans ,book ,030203 arthritis & rheumatology ,Malalts hospitalitzats ,Immunosupressió ,business.industry ,Sick children ,medicine.disease ,Rheumatology ,Arthritis, Juvenile ,Infectious arthritis ,Pediatri: 760 [VDP] ,Orthopedic surgery ,Opportunistiske infeksjoner ,book.journal ,lcsh:RC925-935 ,business ,Infeccions oportunistes ,Immunosuppression - Abstract
Background: To derive a list of opportunistic infections (OI) through the analysis of the juvenile idiopathic arthritis (JIA) patients in the Pharmachild registry by an independent Safety Adjudication Committee (SAC). Methods: The SAC (3 pediatric rheumatologists and 2 pediatric infectious disease specialists) elaborated and approved by consensus a provisional list of OI for use in JIA. Through a 5 step-procedure, all the severe and serious infections, classified as per MedDRA dictionary and retrieved in the Pharmachild registry, were evaluated by the SAC by answering six questions and adjudicated with the agreement of 3/5 specialists. A final evidence-based list of OI resulted by matching the adjudicated infections with the provisional list of OI. Results: A total of 772 infectious events in 572 eligible patients, of which 335 serious/severe/very severe non-OI and 437 OI (any intensity/severity), according to the provisional list, were retrieved. Six hundred eighty-two of 772 (88.3%) were adjudicated as infections, of them 603/682 (88.4%) as common and 119/682 (17.4%) as OI by the SAC. Matching these 119 opportunistic events with the provisional list, 106 were confirmed by the SAC as OI, and among them infections by herpes viruses were the most frequent (68%), followed by tuberculosis (27.4%). The remaining events were divided in the groups of non-OI and possible/patient and/or pathogen-related OI. Conclusions: We found a significant number of OI in JIA patients on immunosuppressive therapy. The proposed list of OI, created by consensus and validated in the Pharmachild cohort, could facilitate comparison among future pharmacovigilance studies. © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
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- 2020
38. A FRAMEWORK OF POTENTIAL INTERVENTIONS TO ACCELERATE GENDER-EQUITABLE CAREER ADVANCEMENT IN ACADEMIC RHEUMATOLOGY
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Ovseiko, P. V., Gossec, L., Andreoli, L., Kiltz, U., Van Mens, L., Hassan, N., Van der Leeden, M., Siddle, H. J., Alunno, A., Mcinnes, I., Damjanov, N., Apparailly, F., Ospelt, C., Van der Horst-Bruinsma, I., Nikiphorou, E., Druce, K., Szekanecz, Z., Sepriano, A., Avcin, T., Bertsias, G., Schett, G., Keenan, A. M., Coates, L. C., Rheumatology, AMS - Ageing & Vitality, AMS - Musculoskeletal Health, APH - Aging & Later Life, APH - Health Behaviors & Chronic Diseases, Rehabilitation medicine, AII - Inflammatory diseases, AMS - Tissue Function & Regeneration, and APH - Societal Participation & Health
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- 2021
39. Differences sustained between diffuse and limited forms of juvenile systemic sclerosis in expanded international cohort. www.juvenile-scleroderma.com
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Foeldvari I, Klotsche J, Kasapcopur O, Adrovic A, Terreri MT, Sakamoto AP, Stanevicha V, Sztajnbok F, Anton-Lopez J, Feldman B, Alexeeva E, Katsicas M, Smith V, Avcin T, Marrani E, Kostik M, Lehman T, Sifuentes-Giraldo WA, Vasquez-Canizares N, Appenzeller S, Janarthanan M, Moll M, Nemcova D, Patwardhan A, Santos MJ, Sawhney S, Schonenberg-Meinema D, Battagliotti C, Berntson L, Bica B, Brunner J, Costa-Reis P, Eleftheriou D, Harel L, Horneff G, Kaiser D, Kallinich T, Lazarevic D, Minden K, Nielsen S, Nuruzzaman F, Uziel Y, Helmus N, and Torok KS
- Abstract
OBJECTIVES: To evaluate the baseline clinical characteristics of juvenile systemic sclerosis (jSSc) patients in the international Juvenile SSc Inception Cohort (jSScC), compare these characteristics between the classically defined diffuse (dcjSSc) and limited cutaneous (lcjSSc) subtypes, and among those with overlap features. METHODS: A cross-sectional study was performed using baseline visit data. Demographic, organ system evaluation, treatment, and patient and physician reported outcomes were extracted and summary statistics applied. Comparisons between dcjSSc 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 jSSc patients were enrolled across 42 centers, 83% were Caucasian, 80% female, dcjSSc predominated (72%), and 17% of the cohort had overlap features. Significant differences were found between dcjSSc and lcjSSc regarding the modified Rodnan Skin Score, presence of Gottron's papules, digital tip ulceration, 6 Minute walk test, composite pulmonary and cardiac involvement. All more frequent in dcSSc except for cardiac involvement. DcjSSc patients had significantly worse scores for physician rated disease activity and damage. A significantly higher occurrence of Gottron's papules, musculoskeletal involvement and composite pulmonary involvement, and significantly lower frequency of Raynaud's phenomenon, were seen in those with overlap features. CONCLUSION: Results from a large international jSSc cohort demonstrate significant differences between dcjSSc and lcjSSc patients including more globally severe disease and increased frequency of ILD in dcjSSc patients, while those with lcSSc have more frequent cardiac involvement. Those with overlap features had an unexpected higher frequency of interstitial lung disease.
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- 2021
40. Consensus-based recommendations for the management of juvenile systemic sclerosis
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Foeldvari I, Culpo R, Sperotto F, Anton-Lopez J, Avcin T, Baildam E, Boros C, Chaitow J, Constantin T, Kasapcopur O, Knupp Feitosa de Oliveira S, Pilkington C, Toplak N, van Royen A, Saad Magalhaes C, Vastert SJ, Wulffraat N, and Zulian F
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recommendations ,treatment ,juvenile systemic sclerosis ,assessment ,severity score ,outcome ,scleroderma - Abstract
Juvenile systemic sclerosis (JSSc) is a rare disease of childhood and currently no international consensus exists with regard to its assessment and treatment. This SHARE (Single Hub and Access point for paediatric Rheumatology in Europe) initiative, based on expert opinion informed by the best available evidence, provides recommendations for the assessment and treatment of patients with JSSc with a view to improving their outcome. Experts focused attention not only on the skin assessment but also on the early signs of internal organ involvement whose proper treatment can significantly affect the long-term outcome. A score for disease severity is proposed in order to perform a structured assessment of outcome over time but a validation in a wider patient population is recommended. Finally, a stepwise treatment approach is proposed in order to unify the standard of care throughout Europe with the aim to reduce morbidity and mortality in this disease.
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- 2021
41. Patients with Juvenile Systemic Sclerosis Have a Distinct Pattern of Organ Involvement: Results from the Juvenile Systemic Sclerosis Inception Cohort
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Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, M, Sakamoto, AP, Sztajnbok, F, Feldman, B, Stanevicha, V, Anton-Lopez J, Khubchandani, R, Alexeeva, E, Johnson, S, Katsicas, MM, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Marrani, E, Schonenberg-Meinema, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Janarthanan, M, Malcova, H, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, Battagliotti, C, Berntson, L, Bica, BERG, Brunner, J, Cimaz, R, Reis, PC, Eleftheriou, D, Harel, L, Horneff, G, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nielsen, S, Nuruzzaman, F, Hetlevik, SO, Uziel, Y, and Helmus, N
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- 2021
42. Development of a New International Antiphospholipid Syndrome Classification Criteria Phase I/II Report: Generation and Reduction of Candidate Criteria
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Barbhaiya, M., Zuily, S., Ahmadzadeh, Y., Amigo, M. -C., Avcin, T., Bertolaccini, M., Branch, D. W., de Jesus, G., Devreese, K. M. J., Frances, C., Garcia, D., Guillemin, F., Levine, S. R., Levy, R. A., Lockshin, M. D., Ortel, T., Seshan, S. V., Tektonidou, M., Wahl, D., Willis, R., Naden, R., Costenbader, K., Erkan, D., Agmon-Levin, N., Aguilar, C., Alba, P., Alpan, O., Ambrozic, A., Amoura, Z., Andrade, D., Andrade, L., Appenzeller, S., Esen, B. A., Atsumi, T., Berkun, Y., Cabral, A., Canaud, G., Cervera, R., Chen, P., Chighizola, C., Cimaz, R., Cohen, H., Costedoat-Chalumeau, N., Crowther, M., Cuadrado, M. J., de Groot, P. G., de Moerloose, P., Derksen, R., Diz-Kucukkaya, R., Dorner, T., Fortin, P., Giannakopoulos, B., Gomez-Puerta, J. A., Gonzalez, E. B., Inanc, M., Kenet, G., Khamashta, M., Kriegel, M., Krilis, S., Laskin, C., Massicotte, P., Mccarty, G., Meroni, P. L., Mikdashi, J., Myones, B., Pengo, V., Petri, M., Roubey, R., Sammaritano, L., Sanna, G., Sciascia, S., Signorelli, F., Soybilgic, A., Tincani, A., Woller, S., and Yelnik, C.
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Antiphospholipid Syndrome ,Consensus ,Delphi Technique ,Humans ,Predictive Value of Tests ,Rheumatology ,Severity of Illness Index ,CONSENSUS STATEMENT ,Potential candidate ,AMERICAN-COLLEGE ,Article ,DISEASE ,Reduction (complexity) ,03 medical and health sciences ,0302 clinical medicine ,Antiphospholipid syndrome ,RHEUMATOLOGY/EUROPEAN LEAGUE ,Nominal group technique ,Medicine and Health Sciences ,Hierarchical organization ,Medicine ,CLINICAL-SIGNIFICANCE ,computer.programming_language ,030203 arthritis & rheumatology ,RISK ,VENOUS THROMBOEMBOLISM ,Information retrieval ,business.industry ,SYSTEMIC-SCLEROSIS ,medicine.disease ,Phase i ii ,MYOCARDIAL-INFARCTION ,ANTIBODIES ,Report generation ,business ,computer ,Delphi - Abstract
Objective : An international multidisciplinary initiative, jointly supported by the American College of Rheumatology and European Alliance of Associations for Rheumatology, is underway to develop new rigorous classification criteria to identify patients with high likelihood of antiphospholipid syndrome (APS) for research purposes. The present study was undertaken to apply an evidence- and consensus-based approach to identify candidate criteria and develop a hierarchical organization of criteria within domains. Methods : During phase I, the APS classification criteria steering committee used systematic literature reviews and surveys of international APS physician scientists to generate a comprehensive list of items related to APS. In phase II, we reviewed the literature, administered surveys, formed domain subcommittees, and used Delphi exercises and nominal group technique to reduce potential APS candidate criteria. Candidate criteria were hierarchically organized into clinical and laboratory domains. Results : Phase I generated 152 candidate criteria, expanded to 261 items with the addition of subgroups and candidate criteria with potential negative weights. Using iterative item reduction techniques in phase II, we initially reduced these items to 64 potential candidate criteria organized into 10 clinical and laboratory domains. Subsequent item reduction methods resulted in 27 candidate criteria, hierarchically organized into 6 additive domains (laboratory, macrovascular, microvascular, obstetric, cardiac, and hematologic) for APS classification. Conclusion : Using data- and consensus-driven methodology, we identified 27 APS candidate criteria in 6 clinical or laboratory domains. In the next phase, the proposed candidate criteria will be used for real-world case collection and further refined, organized, and weighted to determine an aggregate score and threshold for APS classification.
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- 2021
43. Male Juvenile Systemic Sclerosis Patients Have More Severe Disease: Results from the International Juvenile Scleroderma Inception Cohort
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Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, M, Sakamoto, AP, Sztajnbok, F, Feldman, B, Stanevicha, V, Anton-Lopez J, Khubchandani, R, Alexeeva, E, Johnson, S, Katsicas, MM, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Marrani, E, Schonenberg-Meinema, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Janarthanan, M, Malcova, H, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, Battagliotti, C, Berntson, L, Bica, BERG, Brunner, J, Cimaz, R, Reis, PC, Eleftheriou, D, Harel, L, Horneff, G, Kaiser, D, Kallinich, T, Lazarevic, D, Minden, K, Nielsen, S, Nuruzzaman, F, Hetlevik, SO, Uziel, Y, and Helmus, N
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- 2021
44. Juvenile systemic sclerosis (jSSc) patients with overlap characteristics do not have mild disease.Results from thejSSc inception cohort
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Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Sakamoto, AP, Feldman, B, Stanevicha, V, Anton, J, Sztajnbok, F, Khubchandani, R, Alexeeva, E, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Marrani, E, Schonenberg, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Janarthanan, M, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, Helmus, N, Foeldvari, I, Klotsche, J, Kasapcopur, O, Adrovic, A, Torok, K, Terreri, MT, Sakamoto, AP, Feldman, B, Stanevicha, V, Anton, J, Sztajnbok, F, Khubchandani, R, Alexeeva, E, Katsicas, M, Sawhney, S, Smith, V, Appenzeller, S, Avcin, T, Kostik, M, Lehman, T, Marrani, E, Schonenberg, D, Sifuentes-Giraldo, WA, Vasquez-Canizares, N, Janarthanan, M, Moll, M, Nemcova, D, Patwardhan, A, Santos, MJ, and Helmus, N
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- 2021
45. The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET
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Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Antunes, AMC, Arnaud, L, Avcin, T, Beretta, L, Bombardieri, S, Burmester, GR, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Costedoat-Chalumeau, N, Doria, A, Ferraris, A, Fischer-Betz, R, Fonseca, JE, Frank, C, Gaglioti, A, Galetti, I, Grunert, J, Guimaraes, V, Hachulla, E, Houssiau, F, Iaccarino, L, Krieg, T, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Montecucco, C, Mouthon, L, Muller-Ladner, U, Rednic, S, Romao, VC, Schneider, M, Smith, V, Sulli, A, Tamirou, F, Taruscio, D, Taulaigo, AV, Terol, E, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P.M., van Laar, JM, Vieira, A, de Vries-Bouwstra, JK, Cutolo, M, Mosca, M, Talarico, R, Aguilera, S, Alexander, T, Amoura, Z, Antunes, AMC, Arnaud, L, Avcin, T, Beretta, L, Bombardieri, S, Burmester, GR, Cannizzo, S, Cavagna, L, Chaigne, B, Cornet, A, Costedoat-Chalumeau, N, Doria, A, Ferraris, A, Fischer-Betz, R, Fonseca, JE, Frank, C, Gaglioti, A, Galetti, I, Grunert, J, Guimaraes, V, Hachulla, E, Houssiau, F, Iaccarino, L, Krieg, T, Limper, M, Malfait, F, Mariette, X, Marinello, D, Martin, T, Matthews, L, Matucci-Cerinic, M, Meyer, A, Montecucco, C, Mouthon, L, Muller-Ladner, U, Rednic, S, Romao, VC, Schneider, M, Smith, V, Sulli, A, Tamirou, F, Taruscio, D, Taulaigo, AV, Terol, E, Tincani, A, Ticciati, S, Turchetti, G, van Hagen, P.M., van Laar, JM, Vieira, A, de Vries-Bouwstra, JK, Cutolo, M, and Mosca, M
- 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.
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- 2021
46. POS0072 COMPREHENSIVE IMMUNE PROFILING OF 20 CHILDREN WITH MULTISYSTEM INFLAMMATORY SYNDROME
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Zajc Avramovic, M., primary, Emersic, N., additional, Kopitar, A. N., additional, Korva, M., additional, Avsic-Zupanc, T., additional, Ihan, A., additional, and Avcin, T., additional
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- 2021
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47. POS1304 JUVENILE SYSTEMIC SCLEROSIS (JSSC) PATIENTS WITH OVERLAP CHARACTERISTICS DO NOT HAVE MILD DISEASE. RESULTS FROM THE JSSC INCEPTION COHORT. WWW.JUVENILESCLERODERMA.COM
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Foeldvari, I., primary, Klotsche, J., additional, Kasapcopur, O., additional, Adrovic, A., additional, Torok, K., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Feldman, B., additional, Stanevicha, V., additional, Anton, J., additional, Sztajnbok, F. R., additional, Khubchandani, R., additional, Alexeeva, E., additional, Katsikas, M., additional, Sawhney, S., additional, Smith, V., additional, Appenzeller, S., additional, Avcin, T., additional, Kostik, M., additional, Lehman, T., additional, Marrani, E., additional, Schonenberg, D., additional, Sifuentes-Giraldo, W. A., additional, Vasquez-Canizares, N., additional, Janarthanan, M., additional, Moll, M., additional, Nemcova, D., additional, Patwardhan, A., additional, Santos, M. J., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Cimaz, R., additional, Costa Reis, P., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Johnson, S., additional, Kaiser, D., additional, Kallinich, T., additional, Lazarevic, D., additional, Minden, K., additional, Nielsen, S., additional, Nuruzzaman, F., additional, Opsahl Hetlevik, S., additional, Uziel, Y., additional, and Helmus, N., additional
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- 2021
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48. POS1318 A NATIONWIDE COHORT STUDY ON CLINICAL AND LABORATORY MANIFESTATIONS IN CHILDREN WITH MULTISYSTEM INFLAMMATORY SYNDROME (MIS-C)
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Zajc Avramovic, M., primary, Vincek, K., additional, Mlakar, G., additional, Emersic, N., additional, Plankar Srovin, T., additional, Avsic-Zupanc, T., additional, Ihan, A., additional, and Avcin, T., additional
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- 2021
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49. OP0074 A FRAMEWORK OF POTENTIAL INTERVENTIONS TO ACCELERATE GENDER-EQUITABLE CAREER ADVANCEMENT IN ACADEMIC RHEUMATOLOGY
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Ovseiko, P. V., primary, Gossec, L., additional, Andreoli, L., additional, Kiltz, U., additional, Van Mens, L., additional, Hassan, N., additional, Van der Leeden, M., additional, Siddle, H. J., additional, Alunno, A., additional, Mcinnes, I., additional, Damjanov, N., additional, Apparailly, F., additional, Ospelt, C., additional, Van der Horst-Bruinsma, I., additional, Nikiphorou, E., additional, Druce, K., additional, Szekanecz, Z., additional, Sepriano, A., additional, Avcin, T., additional, Bertsias, G., additional, Schett, G., additional, Keenan, A. M., additional, and Coates, L. C., additional
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- 2021
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50. POS0079 PATIENTS WITH JUVENILE SYSTEMIC SCLEROSIS HAVE A DISTINCT PATTERN OF ORGAN INVOLVEMENT.RESULTS FROM THE JUVENILE SYSTEMIC SCLEROSIS INCEPTION COHORT. WWW.JUVENILE-SCLERODERMA.COM
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Foeldvari, I., primary, Klotsche, J., additional, Kasapcopur, O., additional, Adrovic, A., additional, Torok, K., additional, Terreri, M. T., additional, Sakamoto, A. P., additional, Feldman, B., additional, Stanevicha, V., additional, Anton, J., additional, Sztajnbok, F. R., additional, Khubchandani, R., additional, Alexeeva, E., additional, Katsikas, M., additional, Sawhney, S., additional, Smith, V., additional, Appenzeller, S., additional, Avcin, T., additional, Kostik, M., additional, Lehman, T., additional, Marrani, E., additional, Schonenberg, D., additional, Sifuentes-Giraldo, W. A., additional, Vasquez-Canizares, N., additional, Janarthanan, M., additional, Moll, M., additional, Nemcova, D., additional, Patwardhan, A., additional, Santos, M. J., additional, Battagliotti, C., additional, Berntson, L., additional, Bica, B., additional, Brunner, J., additional, Cimaz, R., additional, Costa Reis, P., additional, Eleftheriou, D., additional, Harel, L., additional, Horneff, G., additional, Johnson, S., additional, Kaiser, D., additional, Kallinich, T., additional, Lazarevic, D., additional, Minden, K., additional, Nielsen, S., additional, Nuruzzaman, F., additional, Opsahl Hetlevik, S., additional, Uziel, Y., additional, and Helmus, N., additional
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- 2021
- Full Text
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