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1. POS0832 IMMUNOSUPPRESSION VERSUS COMBINATION OF IMMUNOSUPPRESSION AND ORAL GLUCOCORTICOIDS FOR SKIN FIBROSIS IN EARLY DIFFUSE SYSTEMIC SCLEROSIS PATIENTS. A TARGET TRIAL EMULATION STUDY FROM THE EUSTAR DATABASE

Author

Mongin, D., primary, Matucci-Cerinic, M., additional, Walker, U., additional, Distler, O., additional, Bečvář, R., additional, Siegert, E., additional, Ananyeva, L. P., additional, Smith, V., additional, Alegre Sancho, J. J., additional, Yavuz, S., additional, Limonta, M., additional, Riemekasten, G., additional, Rezus, E., additional, Vonk, M., additional, Truchetet, M. E., additional, Del Galdo, F., additional, Courvoisier, D. S., additional, and Iudici, M., additional

Published
2024
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8. Cohort Enrichment Strategies for Progressive Interstitial Lung Disease in Systemic Sclerosis From European Scleroderma Trials and Research

Author

Hoffmann-Vold A. -M., Brunborg C., Airo P., Ananyeva L. P., Czirjak L., Guiducci S., Hachulla E., Li M., Mihai C., Riemekasten G., Sfikakis P. P., Valentini G., Kowal-Bielecka O., Allanore Y., Distler O., Vacca A., Giollo A., Balbir-Gurman A., Gheorghiu A. M., Marcoccia A., Herrick A., Radic M., Stamenkovic B., Anic B., Granel B., Ribi C., Selmi C. F., Carlos de la Puente M., de Souza Muller C., Denton C., Kayser C., Tanaseanu C. -M., Majewski D., Rimar D., Krasowska D., Veale D., Walker U., Kerzberg E., Rezus E., Zanatta E., Siegert E., De Langhe E., Oksel F., Ingegnoli F., Cantatore F. P., Szucs G., Cuomo G., Seskute G., Litinsky V., Castellvi I., Morovic-Vergles J., Sibilia J., Henes J., Solanki K., Perdan-Pirkmajer K., Herrmann K., Saketkoo L. A., Stamp L., Mouthon L., Salvador M. J., Pozzi M. R., Uprus M., Vanthuyne M., Engelhart M., Kohm M., Iudici M., Inanc M., Fathi N., Pamuk N., Garcia de la Pena Lefebv P., Carreira P. E., Bancel D. F., Moroncini L., Montecucco C., Ancuta C., Sunderkotter C., Muller-Ladner U., Rosato E., Kucharz E. J., Iannone F., Del Galdo F., Poormoghim H., Kotter I., Distler J., Cutolo M., Tikly M., Damjanov N., Hunzelmann N., Vlachoyiannopoulos P., Hasler P., Sarzi Puttini P., Wiland P., Becvar R., Yavuz S., Zdrojewski Z., Pellerito R., Foti R., Ionescu R. M., Adler S., Kahl S., Moiseev S., Stebbings S., Rednic S., Negrini S., Heitmann S., Ullman S., Agachi S., Martin T., Schmeiser T., Riccieri V., Smith V., Bernardino V., Ortiz-Santamaria V., Hsu V. M., Abdel Atty Mohamed W. A., Hoffmann-Vold, A. -M., Brunborg, C., Airo, P., Ananyeva, L. P., Czirjak, L., Guiducci, S., Hachulla, E., Li, M., Mihai, C., Riemekasten, G., Sfikakis, P. P., Valentini, G., Kowal-Bielecka, O., Allanore, Y., Distler, O., Vacca, A., Giollo, A., Balbir-Gurman, A., Gheorghiu, A. M., Marcoccia, A., Herrick, A., Radic, M., Stamenkovic, B., Anic, B., Granel, B., Ribi, C., Selmi, C. F., Carlos de la Puente, M., de Souza Muller, C., Denton, C., Kayser, C., Tanaseanu, C. -M., Majewski, D., Rimar, D., Krasowska, D., Veale, D., Walker, U., Kerzberg, E., Rezus, E., Zanatta, E., Siegert, E., De Langhe, E., Oksel, F., Ingegnoli, F., Cantatore, F. P., Szucs, G., Cuomo, G., Seskute, G., Litinsky, V., Castellvi, I., Morovic-Vergles, J., Sibilia, J., Henes, J., Solanki, K., Perdan-Pirkmajer, K., Herrmann, K., Saketkoo, L. A., Stamp, L., Mouthon, L., Salvador, M. J., Pozzi, M. R., Uprus, M., Vanthuyne, M., Engelhart, M., Kohm, M., Iudici, M., Inanc, M., Fathi, N., Pamuk, N., Garcia de la Pena Lefebv, P., Carreira, P. E., Bancel, D. F., Moroncini, L., Montecucco, C., Ancuta, C., Sunderkotter, C., Muller-Ladner, U., Rosato, E., Kucharz, E. J., Iannone, F., Del Galdo, F., Poormoghim, H., Kotter, I., Distler, J., Cutolo, M., Tikly, M., Damjanov, N., Hunzelmann, N., Vlachoyiannopoulos, P., Hasler, P., Sarzi Puttini, P., Wiland, P., Becvar, R., Yavuz, S., Zdrojewski, Z., Pellerito, R., Foti, R., Ionescu, R. M., Adler, S., Kahl, S., Moiseev, S., Stebbings, S., Rednic, S., Negrini, S., Heitmann, S., Ullman, S., Agachi, S., Martin, T., Schmeiser, T., Riccieri, V., Smith, V., Bernardino, V., Ortiz-Santamaria, V., Hsu, V. M., and Abdel Atty Mohamed, W. A.

Subjects
interstitial lung disease, Pulmonary and Respiratory Medicine, enrichment, systemic sclerosis, clinical trial, Cardiology and Cardiovascular Medicine, Critical Care and Intensive Care Medicine
Abstract

BACKGROUND: Enrichment strategies from clinical trials for progressive systemic sclerosis-associated interstitial lung disease (SSc-ILD) have not been tested in a real-life cohort.RESEARCH QUESTION: Do enrichment strategies for progressive ILD impact efficacy, repre-sentativeness, and feasibility in patients with SSc-ILD from the European Scleroderma Trials and Research (EUSTAR) database?STUDY DESIGN AND METHODS: We applied the inclusion criteria of major recent SSc-ILD trials (Study of the Efficacy and Safety of Tocilizumab in Participants With Systemic Sclerosis [focuSSced], Scleroderma Lung Study II [SLS II], and Safety and Efficacy of Nintedanib in Systemic Sclerosis [SENSCIS]) and assessed progressive ILD, which was defined as absolute change in FVC and as significant progression (FVC decline $10%). Data were compared with all patients and with patients who did not fulfill any inclusion criteria. RESULTS: In total, 2,258 patients with SSc-ILD were included: 31.2% of the patients met SENSCIS criteria; 5.8% of the patients met SLS II criteria; 1.6% of the patients met focuSSced criteria, and 67.7% (1,529) of the patients did not meet any criteria. In the first 12 + 3 months, the absolute FVC decline in all patients and in patients who fulfilled criteria from SENSCIS was -0.1%, in patients who fulfilled criteria from focuSSced was -3.7%, and in patients who fulfilled criteria from SLS II was 2.3%, with accompanying more progressors in focuSSced. The patient populations that fulfilled the different study inclusion criteria significantly differed in various clinical parameters. In the second 12-month period, SENSCIS-enriched patients had a further absolute FVC% decline as described for the total cohort. In contrast, patients who fulfilled the focuSSced and SLS II criteria showed numeric improvement of lung function. There were no significant associations of enrichment criteria and ILD progression.INTERPRETATION: The application of enrichment criteria from previous clinical trials showed enrichment for progression with variable success, which led to selected patient populations reducing feasibility of recruitment. These findings are important for future clinical trial design and interpretation of the results of published trials.CHEST 2023; 163(3):586-598

Published
2023

13. Classification, categorization and essential items for digital ulcer evaluation in systemic sclerosis: a DeSScipher/European Scleroderma Trials and Research group (EUSTAR) survey

Author

Blagojevic, J., Bellando-Randone, S., Abignano, G., Avouac, J., Cometi, L., Czirják, L., Denton, C. P., Distler, O., Frerix, M., Guiducci, S., Huscher, D., Jaeger, V. K., Lóránd, V., Maurer, B., Nihtyanova, S., Riemekasten, G., Siegert, E., Tarner, I. H., Vettori, S., Walker, U. A., Allanore, Y., Müller-Ladner, U., Del Galdo, F., Matucci-Cerinic, M., and EUSTAR co-workers

Published
2019
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16. Older patients’ perceived burdens of their health problems: a cross-sectional analysis in 74 German general practices

Author

Junius-Walker U, Wiese B, Klaaßen-Mielke R, Theile G, Müller CA, and Hummers-Pradier E

Subjects
Medicine (General), R5-920
Abstract

Ulrike Junius-Walker,1 Birgitt Wiese,1 Renate Klaaßen-Mielke,2 Gudrun Theile,1,3 Christiane Annette Müller,4 Eva Hummers-Pradier4 1Institute of General Practice, Hannover Medical School, Hannover, 2Department of Medical Informatics, Biometry and Epidemiology, Ruhr-University, Bochum, Germany; 3Geriatric Clinic University Hospital, Zurich, Switzerland; 4Department of General Practice/Family Medicine, University Medical Center Göttingen, Georg-August-University, Göttingen, Germany Background: Older patients often experience the burden of multiple health problems. Physicians need to consider them to arrive at a holistic treatment plan. Yet, it has not been systematically investigated as to which personal burdens ensue from certain health conditions. Objective: The objective of this study is to examine older patients’ perceived burden of their health problems. Patients and methods: The study presents a cross-sectional analysis in 74 German general practices; 836 patients, 72 years and older (mean 79±4.4), rated the burden of each health problem disclosed by a comprehensive geriatric assessment. Patients rated each burden using three components: importance, emotional impact, and impact on daily activities. Cluster analyses were performed to define patterns in the rating of these components of burden. In a multilevel logistic regression analysis, independent factors that predict high and low burden were explored. Results: Patients had a median of eleven health problems and rated the burden of altogether 8,900 health problems. Four clusters provided a good clustering structure. Two clusters describe a high burden, and a further two, a low burden. Patients attributed a high burden to social and psychological health problems (especially being a caregiver: odds ratio [OR] 10.4, 95% confidence interval [CI] 4.4–24.4), to specific symptoms (eg, claudication: OR 2.3, 95% CI 1.3–4.0; pain: OR 2.3, 95% CI 1.6–3.1), and physical disabilities. Patients rated a comparatively low burden for most of their medical findings, for cognitive impairment, and lifestyle issues (eg, hypertension: OR 0.2, 95% CI 0.2–0.3). Conclusion: The patients experienced a relatively greater burden for physical disabilities, mood, or social issues than for diseases themselves. Physicians should interpret these burdens in the individual context and consider them in their treatment planning. Keywords: patient preference, quality of life, older adults, general practice, cost of illness

Published
2015

17. Persistent inflammation in systemic sclerosis is strongly associated with mortality: a EUSTAR database analysis

Author

Guler, S A, primary, Sarbu, A, additional, Stadler, O, additional, Allanore, Y, additional, Bernardino, V, additional, Distler, J H, additional, Gabrielli, A, additional, Hoffmann-Vold, A, additional, Matucci-Cerinic, M, additional, Müller-Ladner, U, additional, Ortiz-Santamaria, V, additional, Rednic, S, additional, Riccieri, V, additional, Smith, V, additional, Ullman, S, additional, Walker, U, additional, Geiser, T, additional, Distler, O, additional, Maurer, B, additional, and Kollert, F, additional

Published
2022
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18. Late Skin Fibrosis in Systemic Sclerosis: A Study from the EUSTAR Cohort

Author

Michael Hughes 1 2, Suiyuan Huang 3 4, Juan Jose Alegre-Sancho 5, Patricia E Carreira 6, Merete Engelhart 7, Eric Hachulla 8, Joerg Henes 9, Eduardo Kerzberg 10, Maria Rosa Pozzi 11, Gabriela Riemekasten 12, Vanessa Smith 13, Gabriella Szücs 14, Marie Vanthuyne 15, Elisabetta Zanatta 16, Oliver Distler 17, Armando G Gabrielli 18, Anna-Maria Hoffmann-Vold 19, Virginia D Steen 20, Dinesh Khanna 3 21, EUSTAR Airò P, Allanore A, Ananieva Lp, Anic B, Balbir-Gurman A, Becvar R, Benvenuti F, Cantatore F P, Chung L S, Cuomo G, Cutolo M, Czirják L, Damjanov N, de Vries-Bouwstra J, Del Galdo F, Distler J, Eyerich K, Farge D, Foti R, Gheorghiu A M, Giollo A, Heitmann S, Herrick A, Hesselstrand R, Hsu I M, Hunzelmann N, Iannone F, Iudici M, Ionescuc M R, Ingegnoli F, Jose J, Joven B E, Kerzberg E, Kucharz E J, Kuwana M, Langhe E D, Launay D, Lefebvre P, Litinsky I, García de la Peña Lefebvre P, González-Martín J J, Li M, Loyo E, Martin T, Matucci-Cerinic M, Maurer B, Moroncini G, Mouthon L, Müller Cs, Müller-Ladner U, Novak S, Pastor P, Pecher A-C, Pellerito R, Pozzi M R, Oksel F, Rednic S, Rezus E, Riccieri V, Rosato E, Saketkoo L A, Salvador M J, Schmeiser T, Selmi C F, Sibilia J, Siegert E, Solanki K, Sommerlatte S, Spertini F, Stamenkovic B, Stamp L, Tanaseanu C-M, Tikly M, Tineo C, Ullman S, Üprus M, Vanthuyne M, Veale D, Walker U, Wiland P, Yargucu F, Yavuz S, University of Zurich, Michael Hughes, 1 2, Suiyuan Huang, 3 4, Juan Jose Alegre-Sancho, 5, Patricia, E Carreira 6, Merete Engelhart, 7, Eric Hachulla, 8, Joerg Henes, 9, Eduardo Kerzberg, 10, Maria Rosa Pozzi, 11, Gabriela Riemekasten, 12, Vanessa Smith, 13, Gabriella Szücs, 14, Marie Vanthuyne, 15, Elisabetta Zanatta, 16, Oliver Distler, 17, Armando, G Gabrielli 18, Anna-Maria Hoffmann-Vold, 19, Virginia, D Steen 20, Dinesh Khanna, 3 21, EUSTAR Airò, P, Allanore, A, Ananieva, Lp, Anic, B, Balbir-Gurman, A, Becvar, R, Benvenuti, F, Cantatore, F P, Chung, L S, Cuomo, G, Cutolo, M, Czirják, L, Damjanov, N, de Vries-Bouwstra, J, Del Galdo, F, Distler, J, Eyerich, K, Farge, D, Foti, R, Gheorghiu, A M, Giollo, A, Heitmann, S, Herrick, A, Hesselstrand, R, Hsu, I M, Hunzelmann, N, Iannone, F, Iudici, M, Ionescuc, M R, Ingegnoli, F, Jose, J, Joven, B E, Kerzberg, E, Kucharz, E J, Kuwana, M, Langhe, E D, Launay, D, Lefebvre, P, Litinsky, I, García de la Peña Lefebvre, P, González-Martín, J J, Li, M, Loyo, E, Martin, T, Matucci-Cerinic, M, Maurer, B, Moroncini, G, Mouthon, L, Müller, C, Müller-Ladner, U, Novak, S, Pastor, P, Pecher, A-C, Pellerito, R, Pozzi, M R, Oksel, F, Rednic, S, Rezus, E, Riccieri, V, Rosato, E, Saketkoo, L A, Salvador, M J, Schmeiser, T, Selmi, C F, Sibilia, J, Siegert, E, Solanki, K, Sommerlatte, S, Spertini, F, Stamenkovic, B, Stamp, L, Tanaseanu, C-M, Tikly, M, Tineo, C, Ullman, S, Üprus, M, Vanthuyne, M, Veale, D, Walker, U, Wiland, P, Yargucu, F, and Yavuz, S

Subjects
Rheumatology, Cohort enrichment, 10051 Rheumatology Clinic and Institute of Physical Medicine, Late disease, Systemic sclerosis, Pharmacology (medical), 610 Medicine & health, Fibrosis, Clinical trial design, Scleroderma, Skin
Abstract

Objectives The early trajectory of skin fibrosis provides insights into the disease course of systemic sclerosis (SSc) including mortality; however, little is known about late skin fibrosis. The aims of our study were to ascertain the prevalence and characteristics of late skin fibrosis in SSc. Methods We developed and tested three conceptual scenarios of late (>5 years after first non-RP feature) skin fibrosis including new worsening of skin disease, and failure to improve after worsening within 5-year window. We defined skin worsening as change in modified Rodnan skin score (mRSS) ≥5 units or ≥25%. Using strict inclusion criteria including complete mRSS, we identified 1,043 (out of 19 115) patients within the EUSTAR database for our analysis. We further restricted analysis within 887 (out of 1043) patients who had lcSSc or dcSSc at baseline. Results One-fifth of patients among the whole cohort (n = 208/1043, 19.9%) experienced mRSS worsening, including in patients with lcSSc or dcSSc at baseline (n = 193/887, 21.8%). This was largely due to new skin worsening after the 5-year window or failure to improve with worsening within the 5-year window. Patients with lower baseline mRSS and lcSSc were more likely to develop late skin fibrosis. Anti-Scl-70 was associated with progression from baseline lcSSc to dcSSc, and anticentromere was protective. Conclusions Late skin fibrosis is not uncommon in SSc. We have identified different patterns relevant to clinical practice and trial design. Late skin fibrosis is a neglected manifestation of SSc and warrants further investigation including to determine clinical outcomes and optimal therapeutic strategy.

Published
2022

19. POS0893 FACTORS TO CONSIDER FOR MEASURING THE EFFECT OF LUNG FUNCTION ON PATIENT REPORTED OUTCOMES IN SYSTEMIC SCLEROSIS PATIENTS: ANALYSIS OF THE EUSTAR DATABASE.

Author

Lazzaroni, M. G., primary, Wilson, M., additional, Hensor, E., additional, Distler, J. H. W., additional, Cuomo, G., additional, Siegert, E., additional, Müller-Ladner, U., additional, Allanore, Y., additional, Salvador, M. J., additional, Anic, B., additional, Walker, U., additional, Czirják, L., additional, Ribi, C., additional, Tanaseanu, C. M., additional, Gabrielli, A., additional, Hoffmann-Vold, A. M., additional, Distler, O., additional, and Del Galdo, F., additional

Published
2022
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21. OP0212-HPR PATIENT ASSESSMENT CHRONIC ILLNESS CARE (PACIC) AND ITS ASSOCIATIONS WITH QUALITY OF LIFE AMONG SWISS PATIENTS WITH SYSTEMIC SCLEROSIS – A MIXED METHODS STUDY

Author

Kocher, A., primary, Simon, M., additional, Dwyer, A. A., additional, Blatter, C., additional, Bogdanovic, J., additional, Künzler-Heule, P., additional, Villiger, P., additional, Dan, D., additional, Distler, O., additional, Walker, U., additional, and Nicca, D., additional

Published
2022
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22. POS0873 PERSISTENT INFLAMMATION IN SYSTEMIC SCLEROSIS IS STRONGLY ASSOCIATED WITH SEVERE DISEASE AND MORTALITY: AN ANALYSIS FROM THE EUSTAR DATABASE

Author

Sarbu, A. C., primary, Guler, S., additional, Stadler, O., additional, Allanore, Y., additional, Bernardino, V., additional, Distler, J. H. W., additional, Gabrielli, A., additional, Hoffmann-Vold, A. M., additional, Matucci-Cerinic, M., additional, Müller-Ladner, U., additional, Ortiz-Santamaria, V., additional, Rednic, S., additional, Riccieri, V., additional, Smith, V., additional, Ullman, S., additional, Walker, U., additional, Geiser, T., additional, Distler, O., additional, Maurer, B., additional, and Kollert, F., additional

Published
2022
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24. Typologie von Absetzstudien - typenspezifische methodische Empfehlungen

Author

Viniol, A, Haasenritter, J, Grede, N, Wegscheider, K, Becker, A, Sitter, H, Gágyor, I, Sönnichsen, A, Mortsiefer, A, Junius-Walker, U, Donner-Banzhoff, N, Viniol, A, Haasenritter, J, Grede, N, Wegscheider, K, Becker, A, Sitter, H, Gágyor, I, Sönnichsen, A, Mortsiefer, A, Junius-Walker, U, and Donner-Banzhoff, N

Published
2022

25. PERSISTENT INFLAMMATION IN SYSTEMIC SCLEROSIS IS STRONGLY ASSOCIATED WITH SEVERE DISEASE AND MORTALITY: AN ANALYSIS FROM THE EUSTAR DATABASE

Author

Sarbu, A.C., Guler, S., Stadler, O., Allanore, Y., Bernardino, V., Distler, J. H. W., Gabrielli, A., Hoffmann-Vold, A. M., Matucci-Cerinic, M., Müller-Ladner, U., Ortiz-Santamaria, V., Rednic, S., Riccieri, V., Smith, V., Ullman, S., Walker, U., Geiser, T., Distler, O., Maurer, B., and Kollert, F.

Subjects
610 Medicine & health
Published
2022
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30. POS0855 PATIENT PREFERENCES, TRADE-OFFS AND ACCEPTABLE RISKS IN THE TREATMENT OF SYSTEMIC SCLEROSIS-ASSOCIATED INTERSTITIAL LUNG DISEASE: A STEP TOWARDS SHARED DECISION-MAKING

Author

Bruni, C., primary, Heidenreich, S., additional, Duenas, A., additional, Hoffmann-Vold, A. M., additional, Gabrielli, A., additional, Allanore, Y., additional, Chatelus, E., additional, Distler, J. H. W., additional, Hachulla, E., additional, Hsu, V., additional, Hunzelmann, N., additional, Khanna, D., additional, Truchetet, M. E., additional, Walker, U., additional, Alves, M., additional, Schoof, N., additional, Saketkoo, L. A., additional, and Distler, O., additional

Published
2021
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32. Additional file 1 of Increased radiographic progression of distal hand osteoarthritis occurring during biologic DMARD monotherapy for concomitant rheumatoid arthritis

Author

Lechtenboehmer, C. A., Burkard, T., Reichenbach, S., Walker, U. A., Burden, A. M., and Hügle, T.

Abstract

Additional file 1: Table S1. Mean duration between visits in years and standard deviation. Figure S1. Patient examples of exposure evaluation for time-varying analyses. bDMARD: biologic disease modifying anti-rheumatic drug. csDMARD: conventional synthetic disease modifying anti-rheumatic drug. Table S2. Missingness per variable throughout follow-up. Table S3. Missingness pattern of variables with missingness only of Cohort 1 throughout follow-up (6136 observations). Table S4. Missingness pattern of variables with missingness only of Cohort 2 throughout follow-up (4511 observations). Table S5. Crude data table. Table S6. Data table for time-invariant Cox proportional hazard regression. Table S7. Data table for time-invariant Cox proportional hazard regression. Table S8. Patient characteristics of patients before exclusion versus patients with one or ≥2 radiographs. Table S9. Median duration between radiographs in years and interquartile range. Table S10. Results of Cox regression analyses of progression of DIP OA crude, fully adjusted, and when adjusting for fewer variables. Table S11. Patient characteristics of patient without osteoarthritis at cohort entry. Table S12. Hazard ratios of incident hand OA per treatment group following Cox time varying regression analyses in subgroups of age, rheumatoid factor, osteoporosis (treatment), and prednisone use. Table S13. Hazard ratios of hand OA progression per treatment group following time-varying Cox proportional hazard regression analyses when not adjusting for DAS28-esr. Table S14. Hazard ratios of hand OA progression per treatment group following time-varying Cox proportional hazard regression analyses when leading the outcome hand OA progression by 6 months. Table 15. Hazard ratios of hand OA incidence per treatment group following Cox time-varying proportional hazard regression analyses without adjusting for DAS28-esr. Table 16. Hazard ratios of hand OA incidence per treatment group following Cox time-varying regression analyses when leading the outcome hand OA progression by 6 months.

Published
2021
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33. A comprehensive framework for navigating patient care in systemic sclerosis: A global response to the need for improving the practice of diagnostic and preventive strategies in SSc

Author

Saketkoo, L.A., Frech, T., Varjú, C., Domsic, R., Farrell, Jessica, Gordon, J.K., Mihai, C., Sandorfi, N., Shapiro, L., Poole, J., Volkmann, E.R., Lammi, M., McAnally, K., Alexanderson, H., Pettersson, H., Hant, F., Kuwana, M., Shah, A.A., Smith, V., Hsu, V., Kowal-Bielecka, O., Assassi, S., Cutolo, M., Kayser, C., Shanmugam, V.K., Vonk, M.C., Fligelstone, K., Baldwin, N., Connolly, K., Ronnow, A., Toth, B., Suave, M., Farrington, S., Bernstein, E.J., Crofford, L.J., Czirják, L., Jensen, K., Hinchclif, M., Hudson, M., Lammi, M.R., Mansour, J., Morgan, N.D., Mendoza, F., Nikpour, M., Pauling, J., Riemekasten, G., Russell, A.M., Scholand, M.B., Seigart, E., Rodriguez-Reyna, T.S., Hummers, L., Walker, U., Steen, V., Saketkoo, L.A., Frech, T., Varjú, C., Domsic, R., Farrell, Jessica, Gordon, J.K., Mihai, C., Sandorfi, N., Shapiro, L., Poole, J., Volkmann, E.R., Lammi, M., McAnally, K., Alexanderson, H., Pettersson, H., Hant, F., Kuwana, M., Shah, A.A., Smith, V., Hsu, V., Kowal-Bielecka, O., Assassi, S., Cutolo, M., Kayser, C., Shanmugam, V.K., Vonk, M.C., Fligelstone, K., Baldwin, N., Connolly, K., Ronnow, A., Toth, B., Suave, M., Farrington, S., Bernstein, E.J., Crofford, L.J., Czirják, L., Jensen, K., Hinchclif, M., Hudson, M., Lammi, M.R., Mansour, J., Morgan, N.D., Mendoza, F., Nikpour, M., Pauling, J., Riemekasten, G., Russell, A.M., Scholand, M.B., Seigart, E., Rodriguez-Reyna, T.S., Hummers, L., Walker, U., and Steen, V.

Abstract

Item does not contain fulltext, Systemic sclerosis (SSc), the most lethal of rheumatologic conditions, is the cause of death in >50% of SSc cases, led by pulmonary fibrosis followed by pulmonary hypertension and then scleroderma renal crisis (SRC). Multiple other preventable and treatable SSc-related vascular, cardiac, gastrointestinal, nutritional and musculoskeletal complications can lead to disability and death. Vascular injury with subsequent inflammation transforming to irreversible fibrosis and permanent damage characterizes SSc. Organ involvement is often present early in the disease course of SSc, but requires careful history-taking and vigilance in screening to detect. Inflammation is potentially reversible provided that treatment intensity quells inflammation and other immune mechanisms. In any SSc phenotype, opportunities for early treatment are prone to be under-utilized, especially in slowly progressive phenotypes that, in contrast to severe progressive ILD, indolently accrue irreversible organ damage resulting in later-stage life-limiting complications such as pulmonary hypertension, cardiac involvement, and malnutrition. A single SSc patient visit often requires much more physician and staff time, organization, vigilance, and direct management for multiple organ systems compared to other rheumatic or pulmonary diseases. Efficiency and efficacy of comprehensive SSc care enlists trending of symptoms and bio-data. Financial sustainability of SSc care benefits from understanding insurance reimbursement and health system allocation policies for complex patients. Sharing care between recognised SSc centers and local cardiology/pulmonary/rheumatology/gastroenterology colleagues may prevent complications and poor outcomes, while providing support to local specialists. As scleroderma specialists, we offer a practical framework with tools to facilitate an optimal, comprehensive and sustainable approach to SSc care. Improved health outcomes in SSc relies upon recogntion, management and, to the

Published
2021

34. PATIENT PREFERENCES, TRADE-OFFS AND ACCEPTABLE RISKS IN THE TREATMENT OF SYSTEMIC SCLEROSIS-ASSOCIATED INTERSTITIAL LUNG DISEASE: A STEP TOWARDS SHARED DECISION-MAKING

Author

Bruni, C., Heidenreich, S., Duenas, A., Hoffmann-Vold, A. M., Gabrielli, A., Allanore, Y., Chatelus, E., Distler, J. H. W., Hachulla, E., Hsu, V., Hunzelmann, N., Khanna, D., Truchetet, M. E., Walker, U., Alves, M., Schoof, N., Saketkoo, L. A., Distler, O., Bruni, C., Heidenreich, S., Duenas, A., Hoffmann-Vold, A. M., Gabrielli, A., Allanore, Y., Chatelus, E., Distler, J. H. W., Hachulla, E., Hsu, V., Hunzelmann, N., Khanna, D., Truchetet, M. E., Walker, U., Alves, M., Schoof, N., Saketkoo, L. A., and Distler, O.

Published
2021

35. A comprehensive framework for navigating patient care in systemic sclerosis: A global response to the need for improving the practice of diagnostic and preventive strategies in SSc

Author

Saketkoo, LA, Frech, T, Varju, C, Domsic, R, Farrell, J, Gordon, JK, Mihai, C, Sandorfi, N, Shapiro, L, Poole, J, Volkmann, ER, Lammi, M, McAnally, K, Alexanderson, H, Pettersson, H, Hant, F, Kuwana, M, Shah, AA, Smith, V, Hsu, V, Kowal-Bielecka, O, Assassi, S, Cutolo, M, Kayser, C, Shanmugam, VK, Vonk, MC, Fligelstone, K, Baldwin, N, Connolly, K, Ronnow, A, Toth, B, Suave, M, Farrington, S, Bernstein, EJ, Crofford, LJ, Czirjak, L, Jensen, K, Hinchclif, M, Hudson, M, Lammi, MR, Mansour, J, Morgan, ND, Mendoza, F, Nikpour, M, Pauling, J, Riemekasten, G, Russell, A-M, Scholand, MB, Seigart, E, Rodriguez-Reyna, TS, Hummers, L, Walker, U, Steen, V, Saketkoo, LA, Frech, T, Varju, C, Domsic, R, Farrell, J, Gordon, JK, Mihai, C, Sandorfi, N, Shapiro, L, Poole, J, Volkmann, ER, Lammi, M, McAnally, K, Alexanderson, H, Pettersson, H, Hant, F, Kuwana, M, Shah, AA, Smith, V, Hsu, V, Kowal-Bielecka, O, Assassi, S, Cutolo, M, Kayser, C, Shanmugam, VK, Vonk, MC, Fligelstone, K, Baldwin, N, Connolly, K, Ronnow, A, Toth, B, Suave, M, Farrington, S, Bernstein, EJ, Crofford, LJ, Czirjak, L, Jensen, K, Hinchclif, M, Hudson, M, Lammi, MR, Mansour, J, Morgan, ND, Mendoza, F, Nikpour, M, Pauling, J, Riemekasten, G, Russell, A-M, Scholand, MB, Seigart, E, Rodriguez-Reyna, TS, Hummers, L, Walker, U, and Steen, V

Abstract

Systemic sclerosis (SSc), the most lethal of rheumatologic conditions, is the cause of death in >50% of SSc cases, led by pulmonary fibrosis followed by pulmonary hypertension and then scleroderma renal crisis (SRC). Multiple other preventable and treatable SSc-related vascular, cardiac, gastrointestinal, nutritional and musculoskeletal complications can lead to disability and death. Vascular injury with subsequent inflammation transforming to irreversible fibrosis and permanent damage characterizes SSc. Organ involvement is often present early in the disease course of SSc, but requires careful history-taking and vigilance in screening to detect. Inflammation is potentially reversible provided that treatment intensity quells inflammation and other immune mechanisms. In any SSc phenotype, opportunities for early treatment are prone to be under-utilized, especially in slowly progressive phenotypes that, in contrast to severe progressive ILD, indolently accrue irreversible organ damage resulting in later-stage life-limiting complications such as pulmonary hypertension, cardiac involvement, and malnutrition. A single SSc patient visit often requires much more physician and staff time, organization, vigilance, and direct management for multiple organ systems compared to other rheumatic or pulmonary diseases. Efficiency and efficacy of comprehensive SSc care enlists trending of symptoms and bio-data. Financial sustainability of SSc care benefits from understanding insurance reimbursement and health system allocation policies for complex patients. Sharing care between recognised SSc centers and local cardiology/pulmonary/rheumatology/gastroenterology colleagues may prevent complications and poor outcomes, while providing support to local specialists. As scleroderma specialists, we offer a practical framework with tools to facilitate an optimal, comprehensive and sustainable approach to SSc care. Improved health outcomes in SSc relies upon recogntion, management and, to the

Published
2021

37. Voraussetzungen für ein neues Versorgungsmodell für ältere Menschen mit Multimorbidität: Ergebnisse und Schlussfolgerungen aus 3-jähriger Forschung im PRISCUS-Verbund

Author

Thiem*, U., Hinrichs*, T., Müller*, C.A., Holt-Noreiks*, S., Nagl*, A., Bucchi, C., Trampisch, U., Moschny, A., Platen, P., Penner, E., Junius-Walker, U., Hummers-Pradier, E., Theile, G., Schmiedl, S., Thürmann, P.A., Scholz, S., Greiner, W., Klaaßen-Mielke, R., Pientka, L., and Trampisch, H.J.

Published
2011
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44. Use of vasoactive/vasodilating drugs for systemic sclerosis (SSc)-related digital ulcers (DUs) in expert tertiary centres: results from the analysis of the observational real-life DeSScipher study

Author

Blagojevic, Jelena, Abignano, Giuseppina, Avouac, Jérôme, Cometi, L, Frerix, Marc, Bellando-Randone, Silvia, Guiducci, Serena, Bruni, Cosimo, Huscher, Dörte, Jaeger, V K, Lóránd, Veronika, Maurer, Britta, Nihtyanova, Svetlana, Riemekasten, Gabriela, Siegert, Elise, Tarner, I H, Vettori, Serena, Walker, U A, Czirják, László, Denton, C P, Distler, Oliver, Allanore, Yannick, Müller-Ladner, Ulf, Moggi-Pignone, Alberto, Matucci-Cerinic, Marco, Del Galdo, Francesco, EUSTAR co-workers, University of Zurich, and Blagojevic, Jelena

Subjects
2745 Rheumatology, 10051 Rheumatology Clinic and Institute of Physical Medicine, 610 Medicine & health
Published
2020
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46. Forschungsprojekt HIOPP-3: Hausärztliche Initiative zur Optimierung der Patientensicherheit bei Polypharmazie - Ergebnisse der Analyse struktureller Qualitätsmerkmale der beteiligten Akteure

Author

Stolz, R, Doyle, IM, Junius-Walker, U, Kirsch, C, Krause, O, Wiese, B, Fuchs, A, Wilm, S, Sparenberg, LC, Wollny, A, Bernard, S, Thürmann, P, Freytag, A, Joos, S, Hannah, H, Stolz, R, Doyle, IM, Junius-Walker, U, Kirsch, C, Krause, O, Wiese, B, Fuchs, A, Wilm, S, Sparenberg, LC, Wollny, A, Bernard, S, Thürmann, P, Freytag, A, Joos, S, and Hannah, H

Published
2020

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