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Original Research Articles

Idiopathic pulmonary fibrosis in Sweden: report from the first year of activity of the Swedish IPF-Registry

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Article: 31090 | Received 23 Jan 2016, Accepted 29 Mar 2016, Published online: 21 Apr 2016

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C Stridsman, JR Konradsen, L Vanfleteren, C Pedroletti, J Binnmyr, P Edfelt, K Fjällman Schärberg, Y Sjöö, F Nyberg, A Lindberg, A Tunsäter & A Ekberg-Jansson. (2020) The Swedish National Airway Register (SNAR): development, design and utility to date. European Clinical Respiratory Journal 7:1.
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Carl Magnus Sköld, Christer Janson, Åsa Klackenberg Elf, Marie Fiaschi, Kerstin Wiklund & Hans Lennart Persson. (2016) A retrospective chart review of pirfenidone-treated patients in Sweden: the REPRIS study. European Clinical Respiratory Journal 3:1.
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Articles from other publishers (33)

Svetlana Chikina, Alexander Cherniak, Zamira Merzhoeva, Igor Tyurin, Natalia Trushenko, Anna Proshkina, Kirill Ataman & Sergey Avdeev. (2023) Russian Registry of Idiopathic Pulmonary Fibrosis: Clinical Features, Treatment Management, and Outcomes. Life 13:2, pages 435.
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Fabián Caro, Ivette Buendía-Roldán, Lorena Noriega-Aguirre, María L. Alberti, Alexandre Amaral, Guillermo Arbo, Santiago Auteri, Aníbal Bermúdez, Pablo Curbelo, Manuel de Jesús Díaz Verduzco, Isabel De la Fuente, Juan I. Enghelmayer, Martin Fernández, Matías Florenzano, Fernando Guillen, Ronaldo Kairalla, Yuri Liberato, Carlos Matiz, Mayra Mejía, Viviana Moyano, Alfredo Pachas, Silvia V. Escotorin, Gabriela Tabaj, Esther Tavera, Alvaro Undurraga, Brenda Varela, José Luis Velazquez & Moises Selman. (2022) Latin American Registry of Idiopathic Pulmonary Fibrosis (REFIPI): Clinical Characteristics, Evolution and Treatment. Archivos de Bronconeumología 58:12, pages 794-801.
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Vincent Cottin, Sonia Gueguen, Stéphane Jouneau, Hilario Nunes, Bruno Crestani, Philippe Bonniaud, Lidwine Wémeau-Stervinou, Martine Reynaud-Gaubert, Dominique Israël-Biet, Jacques Cadranel, Sylvain Marchand-Adam, Sébastien Quétant, Sandrine Hirschi, David Montani, Anne-Sophie Gamez, Marie Chevereau, Isabelle Dufaure-Garé, Serge Amselem & Annick Clement. (2022) Impact of Gender on the Characteristics of Patients with Idiopathic Pulmonary Fibrosis Included in the RaDiCo-ILD Cohort. Respiration 101:1, pages 34-45.
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Vincent Cottin, Sonia Guéguen, Hilario Nunes, Stéphane Jouneau, Bruno Crestani, Philippe Bonniaud, Lidwine Wemeau, Dominique Israël-Biet, Martine Reynaud-Gaubert, Anne Gondouin, Jacques Cadranel, Sylvain Marchand-Adam, Marie Chevereau, Isabelle Dufaure-Garé, Serge Amselem, Annick Clément, Emmanuel Bergot, Philippe Bonniaud, Arnaud Bourdin, Jacques Cadranel, Cécile Chenivesse, Vincent Cottin, Bruno Crestani, Jean-Charles Dalphin, Claire Dromer, Emmanuel Gomez, Sandrine Hirschi, Dominique Israël-Biet, Stéphane Jouneau, Sylvain Marchand-Adam, David Montani, Hilario Nunes, Grégoire Prévot, Sébastien Quetant, Martine Reynaud-Gaubert, Dominique Valeyre & Lidwine Wemeau. (2021) Treatment of Idiopathic Pulmonary Fibrosis with Capsule or Tablet Formulations of Pirfenidone in the Real-Life French RaDiCo-ILD Cohort. Advances in Therapy 39:1, pages 405-420.
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Dimitrios Kalafatis, Anna Löfdahl, Per Näsman, Göran Dellgren, Åsa M. Wheelock, Linda Elowsson Rendin, Magnus Sköld & Gunilla Westergren-Thorsson. (2021) Distal Lung Microenvironment Triggers Release of Mediators Recognized as Potential Systemic Biomarkers for Idiopathic Pulmonary Fibrosis. International Journal of Molecular Sciences 22:24, pages 13421.
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Jing Gao, Dimitrios Kalafatis, Lisa Carlson, Ida H. A. Pesonen, Chuan-Xing Li, Åsa Wheelock, Jesper M. Magnusson & C. Magnus Sköld. (2021) Baseline characteristics and survival of patients of idiopathic pulmonary fibrosis: a longitudinal analysis of the Swedish IPF Registry. Respiratory Research 22:1.
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Michael T. Durheim, Elisabeth Bendstrup, Lisa Carlson, Eva M. Sutinen, Charlotte Hyldgaard, Dimitrios Kalafatis, Marjukka Myllärniemi, C. Magnus Sköld & Tone Sjåheim. (2021) Outcomes of patients with advanced idiopathic pulmonary fibrosis treated with nintedanib or pirfenidone in a real‐world multicentre cohort. Respirology 26:10, pages 982-988.
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Lisa G. Spencer, Maria Loughenbury, Nazia Chaudhuri, Monica Spiteri & Helen Parfrey. (2021) Idiopathic pulmonary fibrosis in the UK: analysis of the British Thoracic Society electronic registry between 2013 and 2019. ERJ Open Research 7:1, pages 00187-2020.
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Ingrid A. Cox, Nicolas Borchers Arriagada, Barbara de Graaff, Tamera J. Corte, Ian Glaspole, Stella Lartey, E. Haydn Walters & Andrew J. Palmer. (2020) Health-related quality of life of patients with idiopathic pulmonary fibrosis: a systematic review and meta-analysis. European Respiratory Review 29:158, pages 200154.
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Bonnie R. Wang, Rex Edwards, Elizabeth A. Freiheit, Yicheng Ma, Cindy Burg, Joao de Andrade, Lisa Lancaster, Kathleen Lindell, Steven D. Nathan, Ganesh Raghu, Kevin Gibson, Mridu Gulati, Wendi Mason, Imre Noth, Bill Schmidt, Cathie Spino, Scott Staszak, Jack Stauffer, Paul J. Wolters, Gregory P. Cosgrove & Kevin R. Flaherty. (2020) The Pulmonary Fibrosis Foundation Patient Registry. Rationale, Design, and Methods. Annals of the American Thoracic Society 17:12, pages 1620-1628.
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Tanja Tran, Martina Šterclová, Nesrin Mogulkoc, Katarzyna Lewandowska, Veronika Müller, Marta Hájková, Mordechai R. Kramer, Dragana Jovanović, Jasna Tekavec-Trkanjec, Michael Studnicka, Natalia Stoeva, Karel Hejduk, Ladislav Dušek, Samy Suissa & Martina Vašáková. (2020) The European MultiPartner IPF registry (EMPIRE): validating long-term prognostic factors in idiopathic pulmonary fibrosis. Respiratory Research 21:1.
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Ida Pesonen, Jing Gao, Dimitrios Kalafatis, Lisa Carlson, Magnus Sköld & Giovanni Ferrara. (2020) Six-minute walking test outweighs other predictors of mortality in idiopathic pulmonary fibrosis. A real-life study from the Swedish IPF registry. Respiratory Medicine: X 2, pages 100017.
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Michael T Durheim, Anna-Maria Hoffmann-Vold, Tomas M Eagan, Arnt-Ove Hovden, May Brit Lund, Gisle Bjerke, Surinder S Birring, Trygve M Jonassen, Odd Erik Johansen & Tone Sjåheim. (2020) ILD-specific health-related quality of life in systemic sclerosis-associated ILD compared with IPF. BMJ Open Respiratory Research 7:1, pages e000598.
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A. V. Chernyak, S. N. Avdeev, A. S. Belevskiy, I. E. Tyurin, S. Yu. Chikina, Z. M. Merzhoeva, S. A. Terpigorev, M. Yu. Brovko, G. V. Neklyudova & N. Yu. Kravchenko. (2020) Pulmonary function test in patients with idiopathic pulmonary fibrosis: data from the National Registry for Moscow and Moscow region. Russian Pulmonology 30:1, pages 31-41.
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Meena Kalluri, Fabrizio Luppi & Giovanni Ferrara. (2020) What Patients With Idiopathic Pulmonary Fibrosis and Caregivers Want: Filling the Gaps With Patient Reported Outcomes and Experience Measures. The American Journal of Medicine 133:3, pages 281-289.
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Wim A. Wuyts, Caroline Dahlqvist, Hans Slabbynck, Marc Schlesser, Natacha Gusbin, Christophe Compere, Sofie Maddens, Yuan-Chi Lee, Klaus-Uwe Kirchgaessler, Karen Bartley & Benjamin Bondue. (2019) Longitudinal clinical outcomes in a real-world population of patients with idiopathic pulmonary fibrosis: the PROOF registry. Respiratory Research 20:1.
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Estrella Fernández-Fabrellas, María Molina-Molina, Joan B. Soriano, José Antonio Rodríguez Portal, Julio Ancochea, Claudia Valenzuela & Antoni Xaubet. (2019) Demographic and clinical profile of idiopathic pulmonary fibrosis patients in Spain: the SEPAR National Registry. Respiratory Research 20:1.
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Thomas Skovhus Prior, Ole Hilberg, Saher Burhan Shaker, Jesper Rømhild Davidsen, Nils Hoyer, Surinder S. Birring & Elisabeth Bendstrup. (2019) Validation of the King’s Brief Interstitial Lung Disease questionnaire in Idiopathic Pulmonary Fibrosis. BMC Pulmonary Medicine 19:1.
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Dimitrios Kalafatis, Jing Gao, Ida Pesonen, Lisa Carlson, C. Magnus Sköld & Giovanni Ferrara. (2019) Gender differences at presentation of idiopathic pulmonary fibrosis in Sweden. BMC Pulmonary Medicine 19:1.
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Roy Pleasants & Robert M. Tighe. (2019) Management of Idiopathic Pulmonary Fibrosis. Annals of Pharmacotherapy 53:12, pages 1238-1248.
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Jaana Kaunisto, Eija-Riitta Salomaa, Ulla Hodgson, Riitta Kaarteenaho, Hannu Kankaanranta, Katri Koli, Tero Vahlberg & Marjukka Myllärniemi. (2019) Demographics and survival of patients with idiopathic pulmonary fibrosis in the FinnishIPF registry. ERJ Open Research 5:3, pages 00170-2018.
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Giovanni Ferrara, Lisen Arnheim-Dahlström, Karen Bartley, Christer Janson, Klaus-Uwe Kirchgässler, Aaron Levine & C. Magnus Sköld. (2019) Epidemiology of Pulmonary Fibrosis: A Cohort Study Using Healthcare Data in Sweden. Pulmonary Therapy 5:1, pages 55-68.
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John Hutchinson, Richard Hubbard & Ganesh Raghu. (2019) Surgical lung biopsy for interstitial lung disease: when considered necessary, should these be done in larger and experienced centres only?. European Respiratory Journal 53:2, pages 1900023.
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Ida Pesonen, Lisa Carlson, Nicola Murgia, Riitta Kaarteenaho, Carl Magnus Sköld, Marjukka Myllärniemi & Giovanni Ferrara. (2018) Delay and inequalities in the treatment of idiopathic pulmonary fibrosis: the case of two Nordic countries. Multidisciplinary Respiratory Medicine 13:1.
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Boglárka Lilla Szentes, Michael Kreuter, Thomas Bahmer, Surinder S. Birring, Martin Claussen, Julia Waelscher, Reiner Leidl & Larissa Schwarzkopf. (2018) Quality of life assessment in interstitial lung diseases:a comparison of the disease-specific K-BILD with the generic EQ-5D-5L. Respiratory Research 19:1.
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Sabrina Bajwah, Joanna M. Davies, Hanan Tanash, David C. Currow, Adejoke O. Oluyase & Magnus Ekström. (2018) Safety of benzodiazepines and opioids in interstitial lung disease: a national prospective study. European Respiratory Journal 52:6, pages 1801278.
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Wim A Wuyts, Caroline Dahlqvist, Hans Slabbynck, Marc Schlesser, Natacha Gusbin, Christophe Compere, Sofie Maddens, Klaus-Uwe Kirchgaessler, Karen Bartley & Benjamin Bondue. (2018) Baseline clinical characteristics, comorbidities and prescribed medication in a real-world population of patients with idiopathic pulmonary fibrosis: the PROOF registry. BMJ Open Respiratory Research 5:1, pages e000331.
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Alex Diamantopoulos, Emily Wright, Katerina Vlahopoulou, Laura Cornic, Nils Schoof & Toby M. Maher. (2018) The Burden of Illness of Idiopathic Pulmonary Fibrosis: A Comprehensive Evidence Review. PharmacoEconomics 36:7, pages 779-807.
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Kristy Purnamawati, Jamie Ann-Hui Ong, Siddharth Deshpande, Warren Kok-Yong Tan, Nihar Masurkar, Jackson Kwee Low & Chester Lee Drum. (2018) The Importance of Sex Stratification in Autoimmune Disease Biomarker Research: A Systematic Review. Frontiers in Immunology 9.
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Giovanni Ferrara, Fabrizio Luppi, Surinder S. Birring, Stefania Cerri, Antonella Caminati, Magnus Sköld & Michael Kreuter. (2018) Best supportive care for idiopathic pulmonary fibrosis: current gaps and future directions. European Respiratory Review 27:147, pages 170076.
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Demosthenes Bouros, Zoe Daniil, Despoina Papakosta, Katerina M. Antoniou, Katerina Markopoulou, Likurgos Kolilekas, George Konstantopoulos & Spyros Papiris. (2018) Design, Rationale, Methodology, and Aims of a Greek Prospective Idiopathic Pulmonary Fibrosis Registry: Investigating Idiopathic Pulmonary Fibrosis in Greece (INDULGE IPF). Respiration 96:1, pages 41-47.
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Conal Hayton & Nazia Chaudhuri. (2017) Managing Idiopathic Pulmonary Fibrosis: Which Drug for Which Patient?. Drugs & Aging 34:9, pages 647-653.
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Helen E. Jo, Ian Glaspole, Christopher Grainge, Nicole Goh, Peter M.A. Hopkins, Yuben Moodley, Paul N. Reynolds, Sally Chapman, E. Haydn Walters, Christopher Zappala, Heather Allan, Gregory J. Keir, Andrew Hayen, Wendy A. Cooper, Annabelle M. Mahar, Samantha Ellis, Sacha Macansh & Tamera J. Corte. (2017) Baseline characteristics of idiopathic pulmonary fibrosis: analysis from the Australian Idiopathic Pulmonary Fibrosis Registry. European Respiratory Journal 49:2, pages 1601592.
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