Abstracts tagged "registry"

Abstract Number: 2556 • ACR Convergence 2023
End-of-Life in Systemic Lupus Erythematosus Beset by Increased Flares and Higher Treatment Burden: Data from a Prospective Large Multinational Cohort
Jiacai Cho¹, Liang Shen², Rangi Kandane-Rathnayake³, Vera Golder³, Worawit Louthrenoo⁴, Yi-Hsing Chen⁵, Laniyati Hamijoyo⁶, Shue-Fen Luo⁷, Yeong-Jian J Wu⁸, Leonid Zamora⁹, Zhanguo Li¹⁰, Sargunan Sockalingam¹¹, Yasuhiro Katsumata¹², Masayoshi Harigai¹², Yanjie Hao¹³, Zhuoli Zhang¹⁴, BMDB Basnayake¹⁵, Madelynn Chan¹⁶, Jun Kikuchi¹⁷, Tsutomu Takeuchi¹⁸, Sang-Cheol Bae¹⁹, Shereen Oon²⁰, Sean O’Neill²¹, Fiona Goldblatt²², Kristine Ng²³, Annie Law²⁴, Nicola Tugnet²⁵, Sunil Kumar²⁶, Cherica Tee²⁷, Michael Tee²⁷, Naoaki Ohkubo²⁸, Yoshiya Tanaka²⁸, Sandra Navarra⁹, Chak Sing Lau²⁹, Alberta Hoi³⁰, Mandana Nikpour³¹, Eric Morand³² and Aisha Lateef³³, ¹National University Hospital, Singapore, Singapore, ²National University of Singapore, Singapore, Singapore, ³Monash University, Department of Medicine, Sub-faculty of Clinical and Molecular Medicine, Clayton, Australia, ⁴Chiang Mai University Hospital, Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Chiang Mai, Thailand, ⁵Taichung Veterans General Hospital, Taichung, Taiwan, ⁶Padjadjaran University/Hasan Sadikin General Hospital, Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Bandung, Indonesia, ⁷Chang Gung University, Department of Rheumatology, Allergy and Immunology, Chang Gung Memorial Hospital, Taoyuan, Taiwan, ⁸Chang Gung University, Department of Rheumatology, Allergy and Immunology, Chang Gung Memorial Hospital, Keelung, Taiwan, ⁹University of Santo Tomas Hospital, Joint and Bone Center, Manila, Philippines, ¹⁰Peking University People’s Hospital, Beijing, China, ¹¹University of Malaya, Department of Medicine, Faculty of Medicine Building, Kuala Lumpur, Malaysia, ¹²Tokyo Women's Medical University, Division of Rheumatology, Department of Internal Medicine, Tokyo, Japan, ¹³The University of Melbourne Department of Medicine at St Vincents Hospital Melbourne, Melbourne, Australia, ¹⁴Peking University First Hospital, Rheumatology and Immunology Department, Beijing, China, ¹⁵Division of Nephrology, Teaching Hospital Kandy, Adelaide, Australia, ¹⁶Tan Tock Seng Hospital, Department of Rheumatology, Allergy & Immunology, Singapore, Singapore, ¹⁷Keio University, Keio, Japan, ¹⁸Keio University School of Medicine and Saitama Medical University, Tokyo, Japan, ¹⁹Hanyang University Hospital for Rheumatic Diseases and Hanyang University Institute for Rheumatology Research, Department of Rheumatology, Seoul, South Korea, ²⁰Department of Medicine, The University of Melbourne at St Vincent’s Hospital, Melbourne, Australia, ²¹Department of Medicine, University of New South Wales, Kensington, Australia, ²²Royal Adelaide Hospital and Flinders Medical Centre, Adelaide, Australia, ²³Waitemata DHB, Auckland, New Zealand, ²⁴Singapore General Hospital; Duke-NUS Medical School, Singapore, Singapore, ²⁵Auckland District Health Board, Auckland, New Zealand, ²⁶Middlemore Hospital, Auckland, New Zealand, ²⁷University of the Philippines, Manila, Philippines, ²⁸University of Occupational and Environmental Health, Kitakyushu, Japan, ²⁹University of Hong Kong, Division of Rheumatology & Clinical Immunology, Department of Medicine, Queen Mary Hospital, Hong Kong, Hong Kong, ³⁰Monash University, Department of Medicine, Sub-faculty of Clinical and Molecular Medicine, Melbourne, Australia, ³¹The University of Melbourne at St. Vincent’s Hospital Melbourne, Departments of Medicine and Rheumatology, Melbourne, Australia, ³²Monash University, Centre for Inflammatory Diseases, Melbourne, Australia, ³³National University Hospital, Rheumatology Division, Department of Medicine, Singapore, Singapore
Background/Purpose: SLE patients suffer high symptom burden at the end-of-life. However, the course of disease and treatment burden in the last year of life have…
Abstract Number: 0980 • ACR Convergence 2023
Temporal Trends in Incidence Rates of Seropositive and Seronegative Rheumatoid Arthritis: A Danish Nationwide Population-based Study
Bolette Soussi¹, René Cordtz², Kirsten Duch², Salome Kristensen³, Asta Linauskas⁴, Christian Bork⁵, Erik Schmidt⁶ and Lene Dreyer³, ¹Center of Rheumatic Research Aalborg, Department of Rheumatology, and Clinical Cancer Research Center, Aalborg University Hospital, Aalborg, Denmark, ²Center of Rheumatic Research Aalborg, Department of Rheumatology, Aalborg University Hospital, Aalborg, Denmark, ³Center of Rheumatic Research Aalborg, Department of Rheumatology, Aalborg University Hospital, and Department of Clinical Medicine, Aalborg University, Aalborg, Denmark, ⁴Department of Rheumatology, North Denmark Region Hospital, and Department of Clinical Medicine, Aalborg University, Hjørring, Denmark, ⁵Department of Cardiology, Aalborg University Hospital, Aalborg, Denmark, ⁶Department of Medicine and Cardiology, Viborg Regional Hospital, and Department of Clinical Medicine, Aalborg University, Viborg, Aalborg, Denmark
Background/Purpose: With growing availability of autoantibody testing and autoantibodies gaining more weight in the 2010 ACR/EULAR classification criteria of rheumatoid arthritis (RA), an increasing incidence…
Abstract Number: 1629 • ACR Convergence 2023
Persons with Rheumatoid Arthritis and Long COVID Had Worse Pre-COVID RA Symptoms and Worse Non-RA Symptoms, as Well as Higher Rates of Fibromyalgia Compared with COVID Infected Long COVID Negative
Kaleb Michaud¹, Sofia Pedro², Shreena Kamlesh Gandhi³ and Frederick Wolfe², ¹University of Nebraska Medical Center, Omaha, NE, ²Forward, The National Databank for Rheumatic Diseases, Wichita, KS, ³Kansas University School of Medicine, Wichita, KS
Background/Purpose: Long COVID, also known as Post COVID syndrome or postacute sequelae of SARS-CoV-2 infection, refers to the development of persistent or new symptoms lasting…
Abstract Number: 0987 • ACR Convergence 2023
Risk Factors and Predictors of Disease Activity in Rheumatoid Arthritis and Psoriatic Arthritis: Data from the Mexican Adverse Events Registry (BIOBADAMEX)
Vijaya Rivera Terán¹, David Vega Morales², Miguel Angel Saavedra Salinas³, Iris Colunga⁴, Sandra Carrillo Vazquez⁵, Dafhne Miranda Hernández⁶, Sergio Durán Barragán⁷, Erick Adrián Zamora Tehozol⁸, Daniel Xavier Xibillé Friedman⁹, Angel Alejandro Castillo Ortiz¹⁰, Sandra Sicsik Ayala¹¹, Fedra Irazoque Palazuelos⁵, Julio César Casasola Vargas¹², Angelica Peña¹³, Omar Eloy Muñoz Monroy¹⁴, Azucena Ramos Sánchez², Luis Valdés Corona¹⁵, Javier Merayo-Chalico¹⁶, Estefania Torres Valdez¹³, Aleni Paz Viscarra¹⁵, Samara Mendieta Zerón¹⁷ and Deshiré Alpízar Rodríguez¹, ¹Colegio Mexicano de Reumatología, Mexico City, Mexico, ²Instituto Mexicano del Seguro Social, Monterrey, Mexico, ³IMSS, Mexico City, Mexico, ⁴Hospital Universitario UANL, Monterrey, Mexico, ⁵Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado, Mexico City, Mexico, ⁶Instituto Mexicano del Seguro Social, Mexico City, Mexico, ⁷Consulta Privada, Guadalajara, Mexico, ⁸Centro Médico Pensiones, Mérida, Mexico, ⁹Práctica Privada, Cuernavaca, Mexico, ¹⁰Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado, Mérida, Mexico, ¹¹Instituto Mexicano del Seguro Social, Torreón, Mexico, ¹²Instituto de Seguridad Social del Estado de México y Municipios, Mexico City, Mexico, ¹³Instituto Mexicano del Seguro Social, Querétaro, Mexico, ¹⁴Hospital Central Militar, Mexico City, Mexico, ¹⁵Práctica Privada, Mexico City, Mexico, ¹⁶Reumátika, Centro de Vanguardia en Reumatología de la Ciudad de México, Mexico City, Mexico, ¹⁷Instituto de Seguridad Social del Estado de México y Municipios, Toluca, Mexico
Background/Purpose: Genetic, demographic, clinical, and immunological factors have been related with the response to treatment in inflammatory rheumatic diseases, such as rheumatoid arthritis (RA) and…
Abstract Number: 1632 • ACR Convergence 2023
Incident Malignancies in Patients with Rheumatoid Arthritis in Daily Rheumatological Care
Martin Schaefer¹, Yvette Meissner¹, Bernhard Manger², Sylvia Berger³, Karin Rockwitz⁴, Anne Regierer⁵ and Anja Strangfeld¹, ¹German Rheumatism Research Center, Berlin, Germany, ²Department of Internal Medicine 3, Friedrich-Alexander University (FAU) Erlangen-Nuremberg and Universitätsklinikum Erlangen, Erlangen, Germany, ³Rheumatologist, Naunhof, Germany, ⁴Rheumatologist, Goslar, Germany, ⁵Deutsches Rheuma-Forschungszentrum Berlin, Berlin, Germany
Background/Purpose: In 2021, the European and US-American regulatory agencies EMA and FDA issued warnings about malignancy risk associated with the Janus kinase inhibitor (JAKi) tofacitinib…
Abstract Number: 0988 • ACR Convergence 2023
Elderly Patients’ Discontinuation of Biologic DMARDs in Patients with Rheumatic Diseases: Data from the Mexican Adverse Events Registry (BIOBADAMEX)
Vijaya Rivera Terán¹, David Vega Morales², Miguel Angel Saavedra Salinas³, Daniel Xavier Xibillé Friedman⁴, Iris Colunga⁵, Sandra Carrillo Vazquez⁶, Dafhne Miranda Hernández⁷, Sergio Durán Barragán⁸, Erick Adrián Zamora Tehozol⁹, Angel Alejandro Castillo Ortiz¹⁰, Sandra Sicsik Ayala¹¹, Fedra Irazoque Palazuelos⁶, Julio César Casasola Vargas¹², Angelica Peña¹³, Omar Eloy Muñoz Monroy¹⁴, Azucena Ramos Sánchez², Luis Valdés Corona¹⁵, Javier Merayo-Chalico¹⁶, Estefania Torres Valdez¹³, Aleni Paz Viscarra¹⁵ and Deshiré Alpízar Rodríguez¹, ¹Colegio Mexicano de Reumatología, Mexico City, Mexico, ²Instituto Mexicano del Seguro Social, Monterrey, Mexico, ³IMSS, Mexico City, Mexico, ⁴Práctica Privada, Cuernavaca, Mexico, ⁵Hospital Universitario UANL, Monterrey, Mexico, ⁶Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado, Mexico City, Mexico, ⁷Instituto Mexicano del Seguro Social, Mexico City, Mexico, ⁸Consulta Privada, Guadalajara, Mexico, ⁹Centro Médico Pensiones, Mérida, Mexico, ¹⁰Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado, Mérida, Mexico, ¹¹Instituto Mexicano del Seguro Social, Torreón, Mexico, ¹²Instituto de Seguridad Social del Estado de México y Municipios, Mexico City, Mexico, ¹³Instituto Mexicano del Seguro Social, Querétaro, Mexico, ¹⁴Hospital Central Militar, Mexico City, Mexico, ¹⁵Práctica Privada, Mexico City, Mexico, ¹⁶Reumátika, Centro de Vanguardia en Reumatología de la Ciudad de México, Mexico City, Mexico
Background/Purpose: The approach to elderly patients (≥60 years) with rheumatic diseases offers certain difficulties and uncertainties. Older adults are a particularly vulnerable group who often…
Abstract Number: 1692 • ACR Convergence 2023
Insights on the Use of JAK-inhibitors in Patients with Psoriatic Arthritis in an International Collaboration of Registers (the “JAK-pot” Study)
Romain Aymon¹, Denis Mongin², Burkhard Leeb³, Monika Mustak-Blagusz⁴, Jakub Závada⁵, Karel Pavelka⁶, Dan Nordstrom⁷, Nina Trokovic⁸, Florenzo Iannone⁹, Catalin Codreanu¹⁰, Ziga Rotar¹¹, Tore Kvien¹², Sella Provan¹³, Manuel Enrique Pombo Suarez¹⁴, Fernando Alonso¹⁵, Fatos Onen¹⁶, Nevsun Inanc¹⁷, Louis Coupal¹⁸, Denis Choquette¹⁹, Galina Lukina²⁰, Ori Elkayam²¹, Victoria Furer²¹, Ana Maria Rodrigues²², Delphine COURVOISIER²³, Axel Finckh²⁴, Michael Nissen² and Kim Lauper²⁵, ¹Geneva University Hospitals, Collonges-sous-Salève, France, ²Geneva University Hospitals, Geneva, Switzerland, ³BioReg, Stockerau, Austria, ⁴BioReg, Vienna, Austria, ⁵Institute of Rheumatology, Prague, Czech Republic, ⁶Institut of Rheumatology and Department of Rheumatology, First Faculty of Medicine, Charles University, Praha, Czech Republic, ⁷Helsinki University Hospital, Helsinki, Finland, ⁸University of Helsinki, Helsinki, Finland, ⁹Rheumatology Unit, Department of Precision and Regenerative Medicine and Ionian Area, University of Bari "Aldo Moro", Bari, Italy, ¹⁰Center for Rheumatic Diseases, Bucharest, Romania, ¹¹University Medical Centre Ljubljana, Ljubljana, Slovenia, ¹²Center for Treatment of Rheumatic and Musculoskeletal Diseases (REMEDY), Diakonhjemmet Hospital, Oslo, Norway, ¹³Diakonhjemmet Hospital, Oslo, Norway, ¹⁴Hospital Clínico Universitario, Santiago de Compostela, Spain, ¹⁵Spanish Society of Rheumatology, Madrid, Spain, ¹⁶Division of Rheumatology, Dokuz Eylul University School of Medicine, Izmir, Turkey, ¹⁷Division of Rheumatology, Medical School, Marmara University, Istanbul, Turkey, ¹⁸Institut de Rhumatologie de Montréal, Montreal, QC, Canada, ¹⁹Centre hospitalier de l'Université de Montréal (CHUM), Université de Montréal, Montréal, QC, Canada, ²⁰Federal state budgetary scientific institution "V.A. Nasonova Research Institute of Rheumatology", Moscow, Russia, ²¹Tel Aviv Medical Center, Tel Aviv, Israel, ²²Sociedade Portuguesa de Reumatologia; Nova Medical School; Hospital dos Lusíadas, Lisbon, Portugal, ²³Division of Rheumatology, Geneva University Hospitals, Geneva, Switzerland, ²⁴HUG, Geneva, Switzerland, ²⁵Geneva University Hospitals, Genève, Switzerland
Background/Purpose: JAK-inhibitors (JAKi) are increasingly being prescribed to treat various inflammatory conditions, including psoriatic arthritis (PsA). While the understanding of JAKi efficacy and safety in…
Abstract Number: 0139 • ACR Convergence 2023
Systemic Vasculitides in Portugal and Brazil: Preliminary Results from the Reuma.pt/vasculitis Registry
Mariana de Aguiar¹, Alexandre wagner Silva de Souza², Joana Martinho³, Adriana Carones⁴, Ana Beatriz Bacchiega de Freitas⁵, Ana Catarina Duarte⁶, Ana Filipa Águeda⁷, Camila Souto Oliveira Elias⁸, Catarina Cortesão⁹, Catarina Soares¹⁰, Carla Macieira¹¹, Carlos Eduardo Garcez Teixeira¹², Daniela Peixoto¹³, Duarte Vinha³, Estela Nogueira³, Fabricia Simil¹⁴, Francisca Guimarães¹³, Frederico Rajão Martins¹⁵, Gilda Ferreira¹⁶, Helena Assunção⁴, Heloisa Rulff⁸, Jorge Pestana Lopes⁶, José Costa³, Julia Medeiros¹⁷, Lilian Santos Porto¹⁸, Luiz Felipe Adsuara¹⁷, Manuella Ochtrop⁸, Maria João Gonçalves¹⁹, Mariana Diz Lopes²⁰, Matheus Vieira²¹, Nikita Khmelinskii¹¹, Rita Torres²², Sarah Neaime¹, Vitor Teixeira²³, Zoraida Sachetto¹² and Cristina Ponte²⁴, ¹Universidade Federal de São Paulo (UNIFESP), São Paulo, Brazil, ²Division of Rheumatology, Medical School, Universidade Federal de São Paulo, São Paulo, Brazil, ³Centro Hospitalar Universitario Lisboa Norte, Lisboa, Portugal, ⁴Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal, ⁵Faculdade de Ciências da Saúde de Barretos, Barretos, Brazil, ⁶Hospital Garcia de Orta, Almada, Portugal, ⁷Centro Hospitalar Universitário Cova da Beira, Covilhã, Portugal, ⁸Universidade Estadual do Rio de Janeiro, Rio de Janeiro, Brazil, ⁹Instituto Português de Reumatologia, Lisboa, Portugal, ¹⁰Centro Unidade Local de Saúde do Alto Minho, Viana do Castelo, Portugal, ¹¹Centro Hospitalar Universitário Lisboa Norte, Lisboa, Portugal, ¹²Universidade Estadual de Campinas, Campinas, Brazil, ¹³Centro Unidade Local de Saúde do Alto Minho, Ponte de Lima, Portugal, ¹⁴Universidade Federal de Minas Gerais, Belo Horizonte, Brazil, ¹⁵Department of Rheumatology, University Hospital Centre of Algarve, Faro, Portugal, ¹⁶Federal University of Minas Gerais, Belo Horizonte, Brazil, ¹⁷Santa Casa de Misericórdia de São Paulo, São Paulo, Brazil, ¹⁸Santa Casa de Misericórdia de Belo Horizonte, Belo Horizonte, Brazil, ¹⁹Centro Hospitalar de Lisboa Ocidental, Lisboa, Portugal, ²⁰Centro Hospitalar Universitário de São João, Porto, Portugal, ²¹Universidade Federal de São Paulo; Universidade Federal do Rio de Janeiro, Rio de Janeiro, Brazil, ²²Hospital Egas Moniz, Lisboa, Portugal, ²³Hospital de Faro, CHUA, Lisbon, Portugal, ²⁴Department of Rheumatology, Centro Hospitalar Universitário Lisboa Norte, Centro Académico de Medicina de Lisboa, Lisbon, Portugal; Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Centro Académico de Medicina de Lisboa, Lisbon, Portugal
Background/Purpose: The epidemiology of vasculitis varies widely across different geographic areas of the world which may be due to different ethnic and environmental factors. Brazil…
Abstract Number: 1024 • ACR Convergence 2023
Relationship Between Race and Ethnicity, Time to Diagnosis, and Disease Activity for Children with Juvenile Idiopathic Arthritis in the CARRA Registry
Sarah McGuire¹, Tania Atanassova², Joanna Madej², Manuel Jimenez², Daniel Horton¹ and for the CARRA TMJ Arthritis Workgroup³, ¹Rutgers Robert Wood Johnson Medical School, New Brunswick, NJ, ²Rutgers, Robert Wood Johnson Medical School, New Brunswick, NJ, ³Childhood Arthritis and Rheumatology Research Alliance, Washington, DC
Background/Purpose: Compared to non-Hispanic White children, Black children diagnosed with juvenile idiopathic arthritis (JIA) have more severe disease at diagnosis and worse outcomes, such as…
Abstract Number: 1850 • ACR Convergence 2023
Long-term Glucocorticoid Use in a Cohort of Elderly Early Rheumatoid Arthritis Patients: A Joint Analysis of Medicare and the Rheumatology Informatics System for Effectiveness (RISE) Data
Andriko Palmowski¹, Eric Roberts², Jing Li², Emma Kersey², Rachael Stovall², Frank Buttgereit³, Jinoos Yazdany⁴ and Gabriela Schmajuk⁵, ¹Charité - Universitätsmedizin Berlin, Berlin, Germany, ²University of California San Francisco, San Francisco, CA, ³Charité Universitätsmedizin, Dept. Rheumatology, Berlin, Germany, ⁴University of California, General Department of Medicine, Division of Rheumatology, San Francisco, CA, ⁵UCSF / SFVA, San Francisco, CA
Background/Purpose: According to recent ACR and EULAR rheumatoid arthritis (RA) guidelines, glucocorticoids (GCs) should only be used for brief periods or not at all. Our…
Abstract Number: 0355 • ACR Convergence 2023
Long Term Safety of Drugs in Systemic Juvenile Idiopathic Arthritis
Ana Isabel Rebollo Gimenez¹, Luca Carlini², Paivi Miettunen³, Ekaterina Alexeeva⁴, Charlotte Myrup⁵, Rebecca Nicolai⁶, Maria Trachana⁷, Valda Stenevicha⁸, Constantin Ailioaie⁹, Elena Tsitsami¹⁰, Alexis-Virgil Cochino¹¹, Chiara Pallotti¹², Silvia Scala¹², Angela Pistorio¹³, Sebastiaan Vastert¹⁴, Joost Swart¹⁵ and Nicolino Ruperto¹⁶, ¹IRCCS Istituto Giannina Gaslini, UOC Reumatologia e Malattie Autoinfiammatorie, Genoa, Italy, ²IRCCS Istituto Giannina Gaslini, UOC Servizio di Sperimentazioni Cliniche Pediatriche, PRINTO, Genoa, Italy, ³University of Calgary and Alberta Children’s Hospital, Calgary, AB, Canada, ⁴Sechenov First Moscow State Medical University of the Ministry of Health of the Russian Federation, Moscow, Russia, ⁵Pediatric rheumatology unit 4272, Rigshospitalet, Copenhagen, Denmark, ⁶Division of Rheumatology, IRCCS Ospedale Pediatrico Bambino Gesù, Rome, Italy, ⁷First Department of pediatrics, Pediatric Immunology and Rheumatology Referral Center, Hippokration General Hospital, Thessaloniki University School of Medicine, Thessaloniki, Greece, ⁸Department of Paediatrics, Riga Stradins University, Children University Hospital, Riga, Latvia, ⁹Pediatric Rheumatology , Alexandru Ioan Cuza University of Iasi, Iasi, Romania, ¹⁰Pediatric Rheumatology Unit, 1st Department of Pediatrics, Children's Hospital "Aghia Sophia", University of Athens, Athens, Greece, ¹¹First Department of Pediatrics, University of Athens Medical School, Aghia Sophia Childrens Hospital, Athens, Greece, ¹²Pediatric and Rheumatology Clinic, IRCCS Istituto Giannina Gaslini, Genoa, Italy, ¹³Direzione Scientifica, IRCCS Istituto Giannina Gaslini, Genoa, Italy, ¹⁴University Medical Center Utrecht, Utrecht, Netherlands, ¹⁵Wilhelmina Children's Hospital / UMC Utrecht, Utrecht, Netherlands, ¹⁶IRCCS Istituto Giannina Gaslini, UOSID Centro Trial, Genova, Italy
Background/Purpose: Evidence on treatment safety in systemic juvenile idiopathic arthritis (sJIA) is limited. Our objective was to evaluate the safety profile of drugs in the…
Abstract Number: 1085 • ACR Convergence 2023
Utilizing a Maintenance of Certification (MOC) Part 4 Quality Improvement Project to Improve Data Completeness in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry
Hemalatha Srinivasalu¹, anne dennos², alan Russell³, Mary Beth Son⁴ and Mara Becker², ¹Children's National Hospital, Washington, DC, ²Duke University, Durham, NC, ³Duke Clinical Research Institute, Duke, NC, ⁴Division of Immunology, Boston Children's Hospital, Boston, MA
Background/Purpose: Minimizing missing data in research registries is a universal challenge. Enrolling patients into a research registry with poor data quality is wasteful and potentially…
Abstract Number: 1903 • ACR Convergence 2023
Assessing Disparities Through Missing Race and Ethnicity Data: Results from a Juvenile Arthritis Registry
Katelyn Banschbach¹, Jade Singleton², Esi Morgan² and Xing Wang³, ¹University of Washington, Seattle, WA, ²Seattle Children's Hospital, Seattle, WA, ³Biostatistics Epidemiology and Analytics in Research (BEAR), Seattle Children’s Research Institute, Seattle, WA
Background/Purpose: Research databases are missing 25-50% of race and ethnicity, typically related to Black and Hispanic data.1,2The absence of this data can lead to inaccurate…
Abstract Number: 025 • 2023 Pediatric Rheumatology Symposium
Patient- and Center-level Risk Factors for Research Lost to Follow-up Using the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry
Monica Aswani, Livie Huie, Kristine Hearld, Melissa Mannion and Emily Smitherman, University of Alabama at Birmingham, Birmingham, AL
Background/Purpose: Clinical registries are typically envisioned to be representative of a target patient population and reflective of health care delivery practices for said population. Variation…
Abstract Number: 059 • 2023 Pediatric Rheumatology Symposium
Update of Clinical and Laboratory Features of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Systemic Juvenile Idiopathic Arthritis-Associated Lung Disease (SJIA-LD) Cohort
Esraa Eloseily¹, Min-Lee Chang², Mary Ellen Riordan³, allan Russell⁴, Marc Natter², Yukiko Kimura⁵ and Grant Schulert¹, ¹Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ²Boston Children's Hospital, Boston, MA, ³Hackensack Meridian Health/ Joseph M. Sanzari Children's Hospital, Hackensack, NJ, ⁴Duke Clinical Research Institute, Durham, NC, ⁵Hackensack Meridian School of Medicine, Hackensack, NJ
Background/Purpose: Systemic juvenile idiopathic arthritis (SJIA) associated lung disease (SJIA-LD) is an emerging and life-threatening clinical problem. Despite recent advances, there remain key unanswered questions…

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