Search

Your search keyword '"Susan, Leonard"' showing total 6 results
Start Over Author "Susan, Leonard" Language english
6 results on '"Susan, Leonard"'

1. Establishing an International Data Linkage Repository Workgroup Toward a Benchmarking Repository

Author

Hye-Chung Kum, Susan Leonard, Özgür Akgün, Trent Alexander, Luiza Antonie, Margaret Levenstein, and Amy O'Hara

Subjects
Demography. Population. Vital events, HB848-3697
Abstract

Introduction Access to real data with diverse attributes is critical for effective development of any data analytic algorithm. Benchmarking data repositories have all been vital to the development of research communities focused on algorithm development. This work reports on the development of such a data repository for record linkage. Objectives and Approach Establishing a common benchmarking repository of real data can propel a field to the next level of rigor by facilitating comparison of different algorithms, understanding what type of algorithms work best under certain real data conditions and problem domains, promoting transparency and replicability of research, and creating incentives for proper citations for contributions. In addition, benchmarking repositories can bring together the diverse stakeholders (e.g., computer scientists, statisticians, data custodians, data users including social, behaviour, economic, and health (SBEH) scientists) that can advance the field more effectively than could researchers from any single discipline. Results In Fall 2016, international leaders in record linkage formed a Data Linkage Repository workgroup (DLRep) to establish a benchmarking data repository for record linkage. The workgroup is working in collaboration with The Inter-university Consortium for Political and Social Research (ICPSR) to host the site data repository planned for release in Summer 2018. The repository for record linkage research will house various types of real data that require linking with metadata, unique handles for citations, proposed algorithms for evaluation criteria, and a platform for posting, sharing, and comparing results as well as citations of relevant papers. Some datasets will have the gold standard published that researchers can evaluate their results against. Other datasets will gather results to build the gold standard as a community. Conclusion/Implications Record linkage methodology is important to domains where data needs to be integrated from multiple sources, including diverse disciplines. Establishing an international interdisciplinary research community around a benchmark data linkage repository to validate and compare linkage algorithms is crucial to fully realizing the social benefits of data about people.

Published
2018
Full Text
View/download PDF

2. Outcomes of COVID-19 in patients with primary systemic vasculitis or polymyalgia rheumatica from the COVID-19 Global Rheumatology Alliance physician registry: a retrospective cohort study

Author

Maria Sol Castaños Menescardi, Mercedes García, Elena Nikiphorou, Ulf Müller-Ladner, Rita Pinheiro Torres, Cassandra Calabrese, Nasra Al-Adhoubi, Sandra Lucia Euzebio Ribeiro, Kaley Beins, Puja Mehta, José Luis Velasco Zamora, Lorena Takashima, Loreta Bukauskiene, Derrick Todd, Gozd Kubra Yardimci, Samia Araujo de Sousa Studart, Ariel Salinas, Babur Salim, Martin Schaefer, Sarah Horton, Bea Maeyaert, Andrea M Seet, Beverley Harrison, Vernon Berglund, Douglas White, Archibald Skemp, Vanessa Castro Coello, Susan Leonard, Guillermo Quiceno, Geraldine McCarthy, Neil Kramer, Reinhard E. Voll, Helena Raffayova, Lianne Kearsley-Fleet, Hernán Maldonado Ficco, Emily L Gilbert, Samir Patel, Arezou Khosroshahi, Boris Karanovic, Jaroslaw Nowakowski, Dagmar Miceková, Márta Király, Saskia Lawson-Tovey, Alison Bays, Katie Williams, Pablo Maid, Montserrat Corteguera Coro, Anna Anna Sabová, Noelia German, Rosana Gallo, María Alejandra Cusa, Philip Robinson, Natalia Herscovich, Branimir Anic, Lorna Neill, Sara Baig, James Pilcher, Lucia Fusi, Jerald Zakem, Eugenia Picco, Monique Hoekstra, Michael S. Putman, Veronica Bellomio, Martina Skamlova, Daniela Spisakova, Caroline Mulvaney Jones, Ezzati Fatemeh, Sona Žlnayová, Silvana Conti, Eva Strakova, Jose A Gomez Puerta, Kristin M D’Silva, Marko Barešic, Yohana Tissera, Roberto Miguel Baez, Theodore Fields, Rachael Flood, Josefina Gallino Yanzi, Fatemah Abutiban, Henrique Ataide Mariz, Martin Zlnay, Mariana Luís, Mariana Pera, Robert Quinet, Claire Vandevelde, Richard Conway, Lubica Capova, Rodolfo Perez Alamino, Romina Nieto, Deborah Parks, Denise Hare, Audrey Low, Faizah Siddique, Zachary S. Wallace, Tiffany Y-T Hsu, Tameka Webb-Detiege, Sheila O'Reilly, Tatiana Barbich, Theo Zijlstra, Kathryn Dao, Luca Quartuccio, Cecilia Pisoni, Maria Isabel Quaglia, Zelmira Macejova, Laure Gossec, Jean W Liew, JoAnn Zell, Tiffany Y.T. Hsu, Rebecca Hasseli, Zara Izadi, Francinne Machado Ribeiro, Christopher Adams, Laura Chadwick, Naomi J Patel, Maria Carmen Torres Martin, Emoke Štenová, Fedra Irazoque, Natalia Lili Cuchiaro, Selda Çelik, Maria Isabel Haye Salinas, Alexandra Balbir-Gurman, Lucy Thornton, Shraddha Jatwani, Jane Leeder, Jeffrey A. Sparks, Pedro Machado, Elizabeth Macphie, Alojzija Hocevar, Melanie Winter, Christopher Hill, Carolina Aeschlimann, Loreto Carmona, Viktoriia Vasylets, Jose Campos, Jiri Vencovsky, Romina Tanten, Karina Cogo, Emily Pfeifer, Zachary S Wallace, Erick Zamora Tehozol, David F L Liew, Christine Graver, Cecilia Romeo, Lenny Geurts-van Bon, Alvaro Andres Reyes Torres, Arundathi Jayatilleke, Lui Cajas, Ana Bertoli, María Victoria Martire, Pascal Chazerain, Boris Kisluk, Anne Wolff, Alba Paula, Maria Marcela Schmid, Marieta Sencarová, Manuel F. Ugarte-Gil, Concetta Lamore, Veronica Savio, Emily Sirotich, Nicole Daver, Inita Bulina, Maria Filkova, Samar Al-Emadi, Jennifer Tyler, Ho So, Anne-Marie Chassin-Trubert, Leanna Wise, Davide Rozza, Yves Piette, Sabrina Solange de la Vega Fernandez, Eva Rath, Angel Alejandro Castillo Ortiz, Simona Rednic, Stéphane Bally, Kimme L Hyrich, Eric Ruderman, Gabriela Maria Guzman Melgar, Diana Cervántes Rosete, Alí Duarte-García, Juan Carlos Cobeta Garcia, Vanda Mlynarikova, Byung Ban, David Karp, Juan José Alegre Sancho, Carlevaris Leandro, Tamar Tanner, Gisela Subils, Susana Isabel Pineda, Ileana Filipescu, Lilliam Miranda, Karen Toribio Toribio, Karen Roberts, María Severina, Maria Valenzuela Almada, Kristin M. D’Silva, Tea Ahel Pavelic, Federico Nicolas Maldonado, Lingli Dong, Kirsty Devine, Ammar Haikal, Sebastian E Sattui, María J. Haye Salinas, Karen Yeter, Jennifer Morgan, Maria Julieta Gamba, Carla Matellan, Juan Alejandro Albiero, Angela Dahle, Martina Bakosova, Julija Zepa, Luciana Casalla, Jonathan S. Hausmann, Andrea Baños, William Davis, Elsa F Mateus, Kristina Kovacevic Stranski, Lindsay Jacobsohn, Milena A. Gianfrancesco, Daric Mueller, Eduardo Cepeda, Tatiana Sofia Rodriguez-Reyna, Sarah L. Mackie, Mahdi Vojdanian, Julieta Silvana Morbiducci, Enrique Giraldo, Gustavo Fabián Rodriguez Gil, Ivana Romina Rojas Tessel, Laura Groseanu, Carla Gobbi, Anja Strangfeld, Maria Soledad Gálvez Elkin, Alexandre Tj Maria, Adam Kilian, Marina Laura Werner, Sebastián Ibáñez, Sushama Mody, Melissa Harvey, Sofía Ornella, Melanie-Ivana Culo, Gabriela Belakova, Luciana Gonzalez Lucero, Marcelo Pinheiro, Natalia de la Torre-Rubio, Sasha Dunt, Khurram Abbass, Jeffrey A Sparks, Beatriz Zaueta, Elizabeth Warner, Servet Akar, Maren Hilton, Evangeline Scopelitis, Julia Scafati, Jeffrey Wilson, Marta Píchová, Rosana Quintana, Mária Oetterová, Diana O'Kane, Paul Sufka, Jinoos Yazdany, Mieke Devinck, Eduardo Martín Nares, Michael Guma, Gimena Gomez, Nicholas Lebedoff, Su-Ann Yeoh, Suneya Hogarty, Sandra Petruzzelli, Ma. Alicia Lazaro, Marina Rull Gabayet, Nafice Costa Araujo, Bimba F Hoyer, Maria Magdelena Tamas, Cecilia Goizueta, María Alejandra Medina, David Vega, Xochitl Jimenez, Rebecca Grainger, Micaela Cosatti, Gilbert Kepecs, Jonathan Eliseo Rebak, Walter Dorman, Dimitrios Vassilopoulos, Ann Knight, Maria de la Vega, Deshiré Alpízar-Rodríguez, Caroline Siegel, Ozan Cemal Icacan, María Elena Calvo, Sabrina Porta, Hesham Hamoud, Sandra Lucia Euzebio Ribeirio, Maxime Samson, Suleman Bhana, Gelsomina Alle, Ioana Felea, Sebastián Moyano, Rosaria Salerno, Carla Maldini, Jody Hargrove, Brahim Dahou, Fabian Risueño, Debora Guaglianone, Olga Lukacova, and Hammad Bajwa

Subjects
Aging, medicine.medical_specialty, Immunology, Autoimmune Disease, Polymyalgia rheumatica, Rheumatology, Clinical Research, Internal medicine, medicine, Immunology and Allergy, Global Rheumatology Alliance, business.industry, Arthritis, Inflammatory and immune system, Evaluation of treatments and therapeutic interventions, Retrospective cohort study, Articles, Odds ratio, medicine.disease, Comorbidity, Giant cell arteritis, 6.1 Pharmaceuticals, business, Vasculitis, Systemic vasculitis
Abstract

Summary Background Patients with primary systemic vasculitis or polymyalgia rheumatica might be at a high risk for poor COVID-19 outcomes due to the treatments used, the potential organ damage cause by primary systemic vasculitis, and the demographic factors associated with these conditions. We therefore aimed to investigate factors associated with COVID-19 outcomes in patients with primary systemic vasculitis or polymyalgia rheumatica. Methods In this retrospective cohort study, adult patients (aged ≥18 years) diagnosed with COVID-19 between March 12, 2020, and April 12, 2021, who had a history of primary systemic vasculitis (antineutrophil cytoplasmic antibody [ANCA]-associated vasculitis, giant cell arteritis, Behcet's syndrome, or other vasculitis) or polymyalgia rheumatica, and were reported to the COVID-19 Global Rheumatology Alliance registry were included. To assess COVID-19 outcomes in patients, we used an ordinal COVID-19 severity scale, defined as: (1) no hospitalisation; (2) hospitalisation without supplemental oxygen; (3) hospitalisation with any supplemental oxygen or ventilation; or (4) death. Multivariable ordinal logistic regression analyses were used to estimate odds ratios (ORs), adjusting for age, sex, time period, number of comorbidities, smoking status, obesity, glucocorticoid use, disease activity, region, and medication category. Analyses were also stratified by type of rheumatic disease. Findings Of 1202 eligible patients identified in the registry, 733 (61·0%) were women and 469 (39·0%) were men, and their mean age was 63·8 years (SD 17·1). A total of 374 (31·1%) patients had polymyalgia rheumatica, 353 (29·4%) had ANCA-associated vasculitis, 183 (15·2%) had giant cell arteritis, 112 (9·3%) had Behcet's syndrome, and 180 (15·0%) had other vasculitis. Of 1020 (84·9%) patients with outcome data, 512 (50·2%) were not hospitalised, 114 (11·2%) were hospitalised and did not receive supplemental oxygen, 239 (23·4%) were hospitalised and received ventilation or supplemental oxygen, and 155 (15·2%) died. A higher odds of poor COVID-19 outcomes were observed in patients who were older (per each additional decade of life OR 1·44 [95% CI 1·31–1·57]), were male compared with female (1·38 [1·05–1·80]), had more comorbidities (per each additional comorbidity 1·39 [1·23–1·58]), were taking 10 mg/day or more of prednisolone compared with none (2·14 [1·50–3·04]), or had moderate, or high or severe disease activity compared with those who had disease remission or low disease activity (2·12 [1·49–3·02]). Risk factors varied among different disease subtypes. Interpretation Among patients with primary systemic vasculitis and polymyalgia rheumatica, severe COVID-19 outcomes were associated with variable and largely unmodifiable risk factors, such as age, sex, and number of comorbidities, as well as treatments, including high-dose glucocorticoids. Our results could be used to inform mitigation strategies for patients with these diseases. Funding American College of Rheumatology and the European Alliance of Associations for Rheumatology.

Published
2021

3. Factors associated with COVID-19-related death in people with rheumatic diseases: results from the COVID-19 Global Rheumatology Alliance physician-reported registry

Author

Anja, Strangfeld, Martin, Schäfer, Milena, A Gianfrancesco, Saskia, Lawson-Tovey, Jean, W Liew, Lotta, Ljung, Elsa, F Mateus, Christophe, Richez, Maria, J Santos, Gabriela, Schmajuk, Carlo, A Scirè, Emily, Sirotich, Jeffrey, A Sparks, Paul, Sufka, Thierry, Thomas, Laura, Trupin, Zachary, S Wallace, Sarah, Al-Adely, Javier, Bachiller-Corral, Suleman, Bhana, Patrice, Cacoub, Loreto, Carmona, Ruth, Costello, Wendy, Costello, Laure, Gossec, Rebecca, Grainger, Eric, Hachulla, Rebecca, Hasseli, Jonathan, S Hausmann, Kimme, L Hyrich, Zara, Izadi, Lindsay, Jacobsohn, Patricia, Katz, Lianne, Kearsley-Fleet, Philip, C Robinson, Jinoos, Yazdany, Pedro, M Machado, COVID-19 Global Rheumatology Alliance, COVID-19 Global Rheumatology Alliance Consortium Collaborators: COVID-19 Global Rheumatology Alliance Consortium, Brahim, Dahou, Marcelo, Pinheiro, Francinne, M Ribeiro, Anne-Marie, Chassin-Trubert, Sebastián, Ibáñez, Lingli, Dong, Lui, Cajas, Hesham, Hamoud, Jérôme, Avouac, Véronique, Belin, Raphaël, Borie, Pascal, Chazerain, Xavier, Chevalier, Pascal, Claudepierre, Gaëlle, Clavel, Marie-Eve, Colette-Cedoz, Bernard, Combe, Elodie, Constant, Nathalie, Costedoat-Chalumeau, Marie, Desmurs, Valérie, Devauchelle-Pensec, Mathilde, Devaux, Robin, Dhote, Yannick, Dieudonné, Fanny, Domont, Pierre-Marie, Duret, Mikaël, Ebbo, Esther, Ebstein, Soumaya El Mahou, Bruno, Fautrel, Renaud, Felten, René-Marc, Flipo, Violaine, Foltz, Antoine, Froissart, Joris, Galland, Véronique, Gaud-Listrat, Sophie, Georgin-Lavialle, Aude, Giraud-Morelet, Jeanine, S Giraudet-Le Quitrec, Philippe, Goupille, Sophie, Govindaraju-Audouard, Franck, Grados, Séverine, Guillaume-Czitrom, Marion, Hermet, Ambre, Hittinger-Roux, Christophe, Hudry, Isabelle, Kone-Paut, Sylvain La Batide Alanore, Pierre, Lafforgue, Sophie, Lahalle, Isabelle, Lambrecht, Vincent, Langlois, Jean-Paul, Larbre, Emmanuel, Ledoult, Christophe, Leroux, Frédéric, Liote, Alexandre TJ Maria, Hubert, Marotte, Arsène, Mekinian, Isabelle, Melki, Laurent, Messer, Catherine, Michel, Gauthier, Morel, Jacques, Morel, Marie-Noelle, Paris-Havard, Edouard, Pertuiset, Thao, Pham, Myriam, Renard, Sabine, Revuz, Sébastien, Rivière, Clémentine, Rousselin, Christian, Roux, Diane, Rouzaud, Jérémie, Sellam, Raphaele, Seror, Amelie, Servettaz, Vincent, Sobanski, Christelle, Sordet, Lionnel, Spielmann, Nathalie, Tieulié, Alice, Tison, Sophie, Trijau, Alexandre, Virone, Ursula, Warzocha, Daniel, Wendling, Frederik, N Albach, Peer, Aries, Elvira, Decker, Urs, Hartmann, Joerg, Henes, Bimba, F Hoyer, Andreas, Krause, Klaus, Krüger, Hanns-Martin, Lorenz, Ulf, Müller-Ladner, Alexander, Pfeil, Anne, Regierer, Jutta, G Richter, Markus, Rihl, Tim, Schmeiser, Hendrik, Schulze-Koops, Christof, Specker, Reinhard, E Voll, Stephanie, Werner, Gabriela MG Melgar, Mahdi, Vojdanian, Andreoli, Laura, Elena, Bartoloni-Bocci, Maurizio, Benucci, Francesco, Campanaro, Marta, Caprioli, Davide, Carboni, Greta, Carrara, Edoardo, Cipolletta, Chiara, Crotti, Gloria, Dallagiacoma, Paola, Faggioli, Rosario, Foti, Franceschini, Franco, Fredi, Micaela, Giacomo, Guidelli, Florenzo, Iannone, Gianpiero, Landolfi, Caludia, Lomater, Ceciclia, Nalli, Simone, Parisi, Luca, Quartuccio, Bernd, Raffeiner, Rossella, Reggia, Marta, Riva, Nicoletta, Romeo, Cinzia, Rotondo, Ettore, Silvagni, Luigi, Sinigaglia, Ilaria, Tinazzi, Anna, Zanetti, Giovanni, Zanframundo, Fatemah, Abutiban, Deshiré, Alpízar-Rodríguez, Marina, R Gabayet, Fedra, Irazoque, Xochitl, Jimenez, Eduardo, Martín, Angel AC Ortiz, Tatiana, S Rodriguez-Reyna, Diana, C Rosete, Erick AZ Tehozol, David, Vega, Beatriz, Zaueta, Nasra, Al-Adhoubi, Babur, Salim, Enrique, Giraldo, Ariel, Salinas, Manuel, Ugarte-Gil, Diogo, Almeida, Miguel, Bernardes, Rita, C Machado, Maria, Rato, Samar, Al-Emadi, Richard, Conway, Rachael, Flood, Juan, J Alegre-Sancho, Montserrat, C Coro, Natalia de la Torre-Rubio, Jose, C Esteban, Maria del Martin, Jose, G Puerta, Johan, Back, Maryam, Dastmalchi, Brigitte, Dupré, Emma, Grenholm, Aase, Hensvold, Ann, Knight, Servet, Akar, Ozan, C Icacan, Laura, Chadwick, Kirsty, Devine, Sasha, Dunt, Lucia, Fusi, Caroline, M Jones, Elizabeth, Macphie, Elena, Nikiphorou, Diana, O'Kane, Sheila, O'Reilly, Samir, Patel, Rosaria, Salerno, Lucy, Thornton, Jenny, Tyler, Claire, Vandevelde, Elizabeth, Warner, Su-Ann, Yeoh, Sara, Baig, Hammad, Bajwa, Byung, Ban, Vernon, Berglund, Cassandra, Calabrese, Kristin, D'Silva, Angela, Dahle, Kathryn, Dao, Nicole, Daver, William, Davis, Walter, Dorman, Ezzati, Fatemeh, Theodore, Fields, Jody, Hargrove, Melissa, Harvey, Maren, Hilton, Tiffany, Hsu, Arundathi, Jayatilleke, David, Karp, Gilbert, Kepecs, Neil, Kramer, Concetta, Lamore, Nicholas, Lebedoff, Susan, Leonard, Sushama, Mody, Jennifer, Morgan, Emily, Pfeifer, Guillermo, Quiceno, Robert, Quinet, Elliot, Rosenstein, Eric, Ruderman, Evangeline, Scopelitis, Naomi, Serling-Boyd, Faizah, Siddique, Archibald, Skemp, Jeffrey, Sparks, Derrick, Todd, Karen, T Toribio, Rachel, Wallwork, Tameka, Webb-Detiege, Douglas, White, Jeffrey, Wilson, Melanie, Winter, Leanna, Wise, Anne, Wolff, Kristen, Young, Jerald, Zakem, Joann, Zell, and Kurt Zimmerman, Leibniz Forschungsinstitut für Molekulare Pharmakolgie = Leibniz Institute for Molecular Pharmacology [Berlin, Allemagne] (FMP), Leibniz Association, University of California, University of Manchester [Manchester], Boston University School of Medicine (BUSM), Boston University [Boston] (BU), Umeå University, EULAR standing committee of People with Arthritis/Rheumatism in Europe (PARE), CHU Bordeaux [Bordeaux], Club Rhumatismes et Inflammation, Faculdade de Medicina [Lisboa], Universidade de Lisboa (ULISBOA), Università degli Studi di Ferrara (UniFE), McMaster University [Hamilton, Ontario], Brigham & Women’s Hospital [Boston] (BWH), Harvard Medical School [Boston] (HMS), INSERM U1059, SAINBIOSE - Santé, Ingénierie, Biologie, Saint-Etienne (SAINBIOSE-ENSMSE), Université Jean Monnet [Saint-Étienne] (UJM)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre Ingénierie et Santé (CIS-ENSMSE), École des Mines de Saint-Étienne (Mines Saint-Étienne MSE), Institut Mines-Télécom [Paris] (IMT)-Institut Mines-Télécom [Paris] (IMT)-École des Mines de Saint-Étienne (Mines Saint-Étienne MSE), Institut Mines-Télécom [Paris] (IMT)-Institut Mines-Télécom [Paris] (IMT), Universidad de Alcalá - University of Alcalá (UAH), Service de rhumatologie [CHU Saint-Antoine], CHU Saint-Antoine [AP-HP], Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), Institut Pierre Louis d'Epidémiologie et de Santé Publique (iPLESP), Sorbonne Université (SU)-Institut National de la Santé et de la Recherche Médicale (INSERM), University of Otago [Dunedin, Nouvelle-Zélande], Université de Lille, Technische Hochschule Mittelhessen - University of Applied Sciences [Giessen] (THM), University of Queensland [Brisbane], University College of London [London] (UCL), Repositório da Universidade de Lisboa, University of California (UC), Universidade de Lisboa = University of Lisbon (ULISBOA), Università degli Studi di Ferrara = University of Ferrara (UniFE), Santé Ingénierie Biologie Saint-Etienne (SAINBIOSE), Centre Ingénierie et Santé (CIS-ENSMSE), Institut Mines-Télécom [Paris] (IMT)-Institut Mines-Télécom [Paris] (IMT)-Université Jean Monnet - Saint-Étienne (UJM)-Institut National de la Santé et de la Recherche Médicale (INSERM), Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU), Institut National de la Santé et de la Recherche Médicale (INSERM)-Sorbonne Université (SU), Strangfeld, A, Schafer, M, Gianfrancesco, M, Lawson-Tovey, S, Liew, J, Ljung, L, Mateus, E, Richez, C, Santos, M, Schmajuk, G, Scire, C, Sirotich, E, Sparks, J, Sufka, P, Thomas, T, Trupin, L, Wallace, Z, Al-Adely, S, Bachiller-Corral, J, Bhana, S, Cacoub, P, Carmona, L, Costello, R, Costello, W, Gossec, L, Grainger, R, Hachulla, E, Hasseli, R, Hausmann, J, Hyrich, K, Izadi, Z, Jacobsohn, L, Katz, P, Kearsley-Fleet, L, Robinson, P, Yazdany, J, Machado, P, and HAL-SU, Gestionnaire

Subjects
Male, 0301 basic medicine, Aging, antirheumatic agents, Epidemiology, Azathioprine, Comorbidity, Disease, Global Health, Cardiovascular, 0302 clinical medicine, [SDV.MHEP.MI]Life Sciences [q-bio]/Human health and pathology/Infectious diseases, Odds Ratio, Immunology and Allergy, Registries, AcademicSubjects/MED00360, [SDV.MHEP.ME] Life Sciences [q-bio]/Human health and pathology/Emerging diseases, [SDV.MHEP.RSOA] Life Sciences [q-bio]/Human health and pathology/Rhumatology and musculoskeletal system, [SDV.MHEP.ME]Life Sciences [q-bio]/Human health and pathology/Emerging diseases, glucocorticoids, Middle Aged, health care, 3. Good health, [SDV.MHEP.RSOA]Life Sciences [q-bio]/Human health and pathology/Rhumatology and musculoskeletal system, Letter to the Editor (Other), 6.1 Pharmaceuticals, [SDV.MHEP.MI] Life Sciences [q-bio]/Human health and pathology/Infectious diseases, Public Health and Health Services, Female, epidemiology, Rituximab, medicine.drug, medicine.medical_specialty, Clinical Sciences, Immunology, autoimmune disease, Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis, Autoimmune Disease, General Biochemistry, Genetics and Molecular Biology, Antibodies, Antineutrophil Cytoplasmic, 03 medical and health sciences, Rheumatology, Sulfasalazine, Rheumatic Diseases, Internal medicine, medicine, Humans, autoimmune diseases, outcome assessment, Aged, Rheumatology and Autoimmunity, 030203 arthritis & rheumatology, Reumatologi och inflammation, SARS-CoV-2, business.industry, Arthritis, Evaluation of treatments and therapeutic interventions, COVID-19, Odds ratio, medicine.disease, Arthritis & Rheumatology, Good Health and Well Being, 030104 developmental biology, [SDV.SPEE] Life Sciences [q-bio]/Santé publique et épidémiologie, COVID-19 Global Rheumatology Alliance, antirheumatic agent, glucocorticoid, [SDV.SPEE]Life Sciences [q-bio]/Santé publique et épidémiologie, business
Abstract

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ., Objectives: To determine factors associated with COVID-19-related death in people with rheumatic diseases. Methods: Physician-reported registry of adults with rheumatic disease and confirmed or presumptive COVID-19 (from 24 March to 1 July 2020). The primary outcome was COVID-19-related death. Age, sex, smoking status, comorbidities, rheumatic disease diagnosis, disease activity and medications were included as covariates in multivariable logistic regression models. Analyses were further stratified according to rheumatic disease category. Results: Of 3729 patients (mean age 57 years, 68% female), 390 (10.5%) died. Independent factors associated with COVID-19-related death were age (66-75 years: OR 3.00, 95% CI 2.13 to 4.22; >75 years: 6.18, 4.47 to 8.53; both vs ≤65 years), male sex (1.46, 1.11 to 1.91), hypertension combined with cardiovascular disease (1.89, 1.31 to 2.73), chronic lung disease (1.68, 1.26 to 2.25) and prednisolone-equivalent dosage >10 mg/day (1.69, 1.18 to 2.41; vs no glucocorticoid intake). Moderate/high disease activity (vs remission/low disease activity) was associated with higher odds of death (1.87, 1.27 to 2.77). Rituximab (4.04, 2.32 to 7.03), sulfasalazine (3.60, 1.66 to 7.78), immunosuppressants (azathioprine, cyclophosphamide, ciclosporin, mycophenolate or tacrolimus: 2.22, 1.43 to 3.46) and not receiving any disease-modifying anti-rheumatic drug (DMARD) (2.11, 1.48 to 3.01) were associated with higher odds of death, compared with methotrexate monotherapy. Other synthetic/biological DMARDs were not associated with COVID-19-related death. Conclusion: Among people with rheumatic disease, COVID-19-related death was associated with known general factors (older age, male sex and specific comorbidities) and disease-specific factors (disease activity and specific medications). The association with moderate/high disease activity highlights the importance of adequate disease control with DMARDs, preferably without increasing glucocorticoid dosages. Caution may be required with rituximab, sulfasalazine and some immunosuppressants.

Published
2021

4. Recommendations for Standardizing Clinical Trial Design and Endoscopic Assessment in Postoperative Crohn's Disease.

Author

Hanzel J, Jairath V, De Cruz P, Guizzetti L, Shackelton LM, Bossuyt P, Duijvestein M, Dulai PS, Grossmann J, Hirten RP, Khanna R, Panes J, Peyrin-Biroulet L, Regueiro M, Rubin DT, Singh S, Stidham RW, Sandborn WJ, Feagan BG, D'Haens GR, and Ma C

Subjects
Anastomosis, Surgical, Clinical Trials as Topic, Endoscopy, Humans, Ileum surgery, Recurrence, Crohn Disease diagnosis, Crohn Disease surgery
Abstract

Background: The lack of standardized methods for clinical trial design and disease activity assessment has contributed to an absence of approved medical therapies for the prevention of postoperative Crohn's disease (CD). We developed recommendations for regulatory trial design for this indication and for endoscopic assessment of postoperative CD activity., Methods: An international panel of 19 gastroenterologists was assembled. Modified Research and Development/University of California Los Angeles methodology was used to rate the appropriateness of 196 statements using a 9-point Likert scale in 2 rounds of voting. Results were reviewed and discussed between rounds., Results: Inclusion of patients with a history of completely resected ileocolonic CD in regulatory clinical trials for the prevention of postoperative recurrence was appropriate. Given the absence of approved medical therapies, a placebo-controlled design with a primary end point of endoscopic remission at 52 weeks was appropriate for drug development for this indication; however, there was uncertainty regarding the appropriateness of a coprimary end point of symptomatic and endoscopic remission and the use of currently available patient-reported outcome measures. The modified Rutgeerts Score, endoscopic assessment of the anastomosis, and a minimum of 5cm of neoterminal ileum were also appropriate; although the appropriateness of other indices including the Simple Endoscopic Score for CD for endoscopic assessment of postoperative CD activity was uncertain., Conclusions: A framework for regulatory trial design for the prevention of postoperative CD recurrence and endoscopic assessment of disease activity has been developed. Research to empirically validate end points for these trials is needed., (© 2021 Crohn’s & Colitis Foundation. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Published
2022
Full Text
View/download PDF

5. Older Adult Patients Use More Aminosalicylate Monotherapy Compared With Younger Patients With Inflammatory Bowel Disease: TARGET-IBD.

Author

Barnes EL, Hanson JS, Regueiro MD, Saha S, Sands BE, Rubin DT, Dubinsky MC, Siegel CA, Gazis DR, Crawford JM, and Long MD

Subjects
Adolescent, Adult, Aged, Chronic Disease, Humans, Odds Ratio, Tumor Necrosis Factor-alpha, United States, Young Adult, Colitis, Ulcerative drug therapy, Colitis, Ulcerative epidemiology, Crohn Disease drug therapy, Crohn Disease epidemiology, Inflammatory Bowel Diseases drug therapy
Abstract

Goal: The goal of this study was to describe medication utilization patterns in older inflammatory bowel disease (IBD) patients., Background: Despite a growing population of older patients with Crohn's disease (CD) and ulcerative colitis (UC), questions remain regarding medication utilization patterns in comparison to younger populations., Materials and Methods: We collected data from the 34 sites in TARGET-IBD, a multicenter, observational cohort. The primary outcome in this study was the IBD-specific therapy utilized among older patients with IBD compared with younger age groups. Therapy use was analyzed using pairwise comparisons and then the odds of IBD-specific therapy use among patients older than age 65 were evaluated using multivariable logistic regression models., Results: We identified 2980 patients with IBD (61% CD). In multivariable analysis, younger patients with UC were significantly less likely to utilize aminosalicylate monotherapy when compared with patients above 65 years [age 18 to 29: adjusted odds ratio (aOR)=0.51, 95% confidence interval (CI): 0.33-0.78]. In patients with CD, younger patients were significantly less likely to use aminosalicylate monotherapy when compared with patients above 65 (greatest difference age 18 to 29: aOR=0.31, 95% CI: 0.18-0.52). Younger patients with CD and UC were significantly more likely to use anti-tumor necrosis factor monotherapy than patients above 65 years (age 18 to 29: aOR=3.87, 95% CI: 2.47-6.06 and aOR=2.68, 95% CI: 1.29-5.58, respectively)., Conclusions: Older patients with IBD demonstrate significant differences in medication utilization, including more aminosalicylate monotherapy and less anti-tumor necrosis factor monotherapy compared with younger age groups. Given the aging population in the United States, these utilization patterns may have long-term implications for disease control., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc.)

Published
2022
Full Text
View/download PDF

6. Methodology and Initial Results From a Real-World Observational Cohort of Patients With Inflammatory Bowel Disease: TARGET-IBD.

Author

Click B, Barnes EL, Cohen BL, Sands BE, Hanson JS, Regueiro M, Rubin DT, Dubinsky MC, Gazis DR, Dalfonso L, Hildebrand JS, Crawford JM, and Long MD

Abstract

Background: Data on care patterns for inflammatory bowel disease (IBD) from large-scale, diverse clinical cohorts in real-world practice are sparse. We developed a real-world cohort of patients receiving care at academic and community sites, for comparative study of therapies and natural history of IBD., Methods: We describe novel methodology of central abstraction of clinical data into a real-world IBD registry with patient reported outcomes (PROs). Baseline demographics, clinical characteristics, healthcare utilization, and disease metrics were assessed. Bivariate statistics were used to compare demographic and clinical data by Crohn disease (CD) or ulcerative colitis (UC) and site of care (academic, community)., Results: In 1 year, 1343 IBD patients (60.1% CD, 38.9% UC) were recruited from 27 academic (49.5%) and community (50.5%) sites, exceeding expectations (110% enrolled). Most participants also consented to provide PROs (59.5%) or biosamples (85.7%). Overall, 48.7% of the cohort provided a baseline PRO, and 62.6% provided a biosample. Compared to UC, CD subjects had higher prior (34.1% CD vs 7.7% UC; P < 0.001) and current (72.1% vs 47.9%; P < 0.001) biologic utilization. CD participants from academic sites had more complicated disease than those from community sites (62.5% vs 46.8% stricturing/penetrating; 33.5% vs 27% perianal; 36.8% vs 14.5% prior biologic, respectively). Nearly all (90.4%) participants had endoscopic data of whom 37.7% were in remission. One-year retention was 98.4%., Conclusions: Centralized data abstraction and electronic PRO capture provided efficient recruitment into a large real-world observational cohort. This novel platform provides a resource for clinical outcomes and comparative effectiveness research in IBD., (© The Author(s) 2021. Published by Oxford University Press on behalf of Crohn's & Colitis Foundation.)

Published
2021
Full Text
View/download PDF

Catalog

Books, media, physical & digital resources
See catalog results