Abstracts tagged "registry"

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…
Abstract Number: 062 • 2023 Pediatric Rheumatology Symposium
Assessment of Barriers and Facilitators in Implementation of the Childhood Arthritis and Rheumatology Research Alliance Consensus Treatment Plans
Cagri Yildirim-Toruner¹, Daniel Glaser², Timothy Beukelman³, Stacy Ardoin⁴, Ahmar Hashmi⁵, Rajdeep Pooni⁶, Maria Fernandez⁵, Vincent Del Gaizo⁷, Leslie Hanrahan⁷, Mary Ellen Riordan⁸, Stacey Tarvin⁹ and CARRA Registry Investigators⁷, ¹Baylor College of Medicine, Texas Children's Hospital, Houston, TX, ²Yale University School of Medicine, New Haven, CT, ³University of Alabama at Birmingham, Birmingham, AL, ⁴Nationwide Children's Hospital, Columbus, OH, ⁵The University of Texas Health Sciences Center at Houston, Institute for Implementation Science, Houston, TX, ⁶Stanford University, Palo Alto, CA, ⁷CARRA, Washington, DC, ⁸Hackensack Meridian Health/ Joseph M. Sanzari Children's Hospital, Hackensack, NJ, ⁹Riley Hospital for Children at Indiana University Health, Indianapolis, IN
Background/Purpose: Since 2010, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) has developed 12 consensus treatment plans (CTP) with the aim of reducing treatment variability…
Abstract Number: 109 • 2023 Pediatric Rheumatology Symposium
Long-term Safety of Biologics versus Conventional Synthetic Treatments in Systemic Juvenile Idiopathic Arthritis Patients
Ana Isabel Rebollo-Giménez¹, Luca Carlini², Yulia Vyzhga³, Silvia Rosina⁴, Ekaterina Alexeeva⁵, Charlotte Myrup⁶, Silvia Magni Manzoni⁷, Maria Trachana⁸, Valda Stanevicha⁹, Constantin Ailioaie¹⁰, Elena Tsitsami¹¹, Alexis-Virgil Cochino¹², Chiara Pallotti¹³, Silvia Scala¹³, Angela Pistorio¹⁴, Sebastiaan Vastert¹⁵, Joost F. Swart¹⁶ and Nicolino Ruperto¹⁷, ¹IRCCS Istituto Giannina Gaslini, UOC Reumatologia e Malattie Infiammatorie, Genova, Italy, ²IRCCS Istituto Giannina Gaslini, UOC Reumatologia e Malattie Autoinfiammatorie, Genova, Italy, ³IRCCS Istituto Giannina Gaslini, UOC Reumatologia e Malattia Infiammatorie, Genova, Italy, ⁴IRCCS Istituto Giannina Gaslini, Genova, Italy, ⁵Federal State Autonomous Institution “National Medical Research Center of Children's Health”, Ministry of Health of the Russian Federation, Moscow, Russia, ⁶Rigshospitalet, Pediatric rheumatology unit 4272, Copenhagem, Denmark, ⁷IRCCS Ospedale Pediatrico Bambino Gesù, Division of Rheumatology, Roma, Italy, ⁸Hippokration General Hospital, Thessaloniki University School of Medicine, First Department of pediatrics, Pediatric Immunology and Rheumatology Referral Center, Thessaloniki, Greece, ⁹Riga Stradins University, Children University Hospital, Riga, Latvia, ¹⁰Alexandru Ioan Cuza University of Iasi, Iasi, Romania, ¹¹Aghia Sophia Childrens Hospital, First Department of Pediatrics, University of Athens Medical School, Athens, Greece, ¹²Institute for Mother and Child Care, Pediatrics, Bucharest, Romania, ¹³IRCCS Istituto Giannina Gaslini, U.O.C. Pediatric and Rheumatology Clinic, PRINTO, Genova, Italy, ¹⁴IRCCS Istituto Giannina Gaslini, Direzione Scientifica, Genova, Italy, ¹⁵Wilhelmina Children’s Hospital, Department of Pediatric Immunology and Rheumatology, Utrecht, The Netherlands, Utrecht, Netherlands, ¹⁶Wilhelmina Children’s Hospital, Department of Pediatric Immunology and Rheumatology, Utrecht, Netherlands, ¹⁷IRCCS Istituto Giannina Gaslini, UOSID Centro Trial, PRINTO, Genova, Italy
Background/Purpose: The better understanding of systemic Juvenile Idiopathic Arthritis (sJIA) pathogenesis and availability of new drugs, such as biologic disease-modifying anti-rheumatic drugs (bDMARDs) specifically dedicated…
Abstract Number: L09 • ACR Convergence 2022
Impact on Access to Methotrexate in the Post-Roe Era
Kristin Wipfler¹, Adam Cornish¹, Rebecca Schumacher², Yomei Shaw³, Patricia Katz⁴ and Kaleb Michaud⁵, ¹FORWARD, The National Databank for Rheumatic Diseases, Omaha, NE, ²FORWARD, The National Databank for Rheumatic Diseases, Wichita, KS, ³FORWARD, The National Databank for Rheumatic Diseases, Santa Fe, NM, ⁴UCSF, San Rafael, CA, ⁵University of Nebraska Medical Center, Omaha, NE
Background/Purpose: Methotrexate is the first line therapy for RA and is used to treat several other rheumatic and non-rheumatic disorders. In high doses, it can…
Abstract Number: 0306 • ACR Convergence 2022
Maintenance of Disease Activity and Treatment Persistence in Patients with Rheumatoid Arthritis Who Switched from Combination to TNF Inhibitor Monotherapy: Results from the Rheumatology Informatics System for Effectiveness (RISE) Registry
Gabriela Schmajuk¹, Nevin Hammam², Jing Li³, David Collier⁴, Greg Kricorian⁵ and Scott Stryker⁶, ¹UCSF / SFVA, San Francisco, CA, ²Rheumatology Department, Faculty of Medicine, Assiut University, Assiut, Egypt, PASADENA, CA, ³University of California, San Francisco, San Francisco, CA, ⁴Amgen Inc., Simi Valley, CA, ⁵Amgen, Inc., Thousand Oaks, CA, ⁶Amgen Inc., San Francisco, CA
Background/Purpose: Data regarding the maintenance of disease activity (DA) and treatment persistence in patients (pts) who switched from combination therapy to monotherapy for the management…
Abstract Number: 1423 • ACR Convergence 2022
Long-Term Treatment with Golimumab Is a Safe Treatment Option Regardless of Risk Factors in Patients with Rheumatoid Arthritis, Psoriatic Arthritis, and Axial Spondyloarthritis: Results from a Real-World Canadian Setting
Regan Arendse¹, Proton Rahman², Philip Baer³, Derek Haaland⁴, Dalton Sholter⁵, Odalis Asin-Milan⁶, Meagan Rachich⁷, Emmanouil Rampakakis⁸, A. Marilise Marrache⁹ and Allen J. Lehman¹⁰, ¹Community Rheumatology Care, Saskatoon, Canada, ²Memorial University, St. John's, NL, Canada, ³Baer Weinberg MPC, Scarborough, ON, Canada, ⁴The Waterside Clinic, Oro Medonte, ON, Canada, ⁵University of Alberta, Edmonton, AB, Canada, ⁶Janssen Canada, Laval, QC, Canada, ⁷Janssen Inc., Guelph, ON, Canada, ⁸McGill University, Department of Pediatrics and JSS Medical Research, Montréal, QC, Canada, ⁹Janssen Inc., Dollard-des-Ormeaux, QC, Canada, ¹⁰Janssen Inc., Toronto, ON, Canada
Background/Purpose: Golimumab (GLM), a tumor necrosis factor inhibitor (TNFi), has demonstrated efficacy and a favorable safety profile in inflammatory rheumatic diseases. Recent safety studies with…
Abstract Number: 0350 • ACR Convergence 2022
Spanish National Registry of Belimumab in Patients with Systemic Lupus Erythematosus
Vicente Aldasoro¹, María Laiño¹, Monica Enguita¹, Santos Castañeda², Javier Loricera³, Carmen Lasa-Teja⁴, Clara Moriano⁵, Vanesa Calvo Río⁶, Ivette Casafont-Solé⁷, Judit Font Urgelles⁷, Patricia Quiroga-Colina⁸, Samuel Hernandez⁹, Sergi Heredia¹⁰, A. Garcia-Aparicio¹¹, Joaquin Maria Belzunegui Otano¹², Aaron Fariña¹³, Francisco Javier Navarro Blasco¹⁴, Patricia Fanlo Mateo¹, Adela Gallego¹⁵, Juan M Blanco Madrigal¹⁶, María Ángeles Matías¹⁷, Cilia Peralta¹⁸, Jordi Camins-Fàbregas¹⁹, Marcos Paulino²⁰, Ana Urruticoechea²¹, Piter Jose Cossio Jimenez²², Miguel Medina Malone²³, Eva Perez Pampin²⁴, Rafaela Ortega-Castro²⁵, Blanca varas de Dios²⁶, Jose Ramon Lamua Riazuelo²⁷ and Emilio Jose Giner²⁸, ¹Hospital Universitario de Navarra, Pamplona, Spain, ²Division of Rheumatology, Hospital Universitario de La Princesa, IIS-Princesa, Madrid, Spain, ³Hospital Universitario Marqués de Valdecilla, IDIVAL, Santander, Spain, ⁴Hospital Universitario Marqués de Valdecilla, Santander, Spain, ⁵Complejo Asistencial Universitario de León, León, Spain, ⁶Valdecilla Hospital, Santander, Spain, ⁷Hospital Universitari Germans Trias i Pujol, Badalona, Spain, ⁸Division of Rheumatology, Hospital Universitario de La Princesa, Madrid, Spain, ⁹Hospital Son Llàtzer, Palma de Mallorca, Spain, ¹⁰Hospital de Sant Joan Despí Moisès Broggi, Sant Joan Despi, Spain, ¹¹Hospital Universitario de Toledo, Toledo, Spain, ¹²Hospital Universitario de Donostia, Donostia-San Sebasti, Spain, ¹³Complejo Asistencial Universitario de Palencia, Palencia, Spain, ¹⁴Hospital General Universitario de Elche, Elche, Spain, ¹⁵Complejo Hospitalario Universitario de Badajoz, Badajoz, Spain, ¹⁶Basurto University Hospital, Bilbao, Spain, ¹⁷Hospital Universitario Infanta Leonor, Madrid, Spain, ¹⁸Hospital Clínico Universitario Lozano Blesa, Zaragoza, Spain, ¹⁹Hospital General de Granollers, Granollers, Spain, ²⁰Hospital General Universiario de Ciudad Real, Ciudad Real, Spain, ²¹Hospital Can Misses, Ibiza, Spain, ²²Hospital Reina Sofia, Tudela, Spain, ²³Hospital Calahorra, Calahorra, Spain, ²⁴Experimental and Observational Rheumatology and Rheumatology Unit, Instituto de Investigacion Sanitaria-Hospital Clínico Universitario de Santiago, Cordoba, Spain, ²⁵IMIBIC/University of Cordoba/Reina Sofia Hospital, Cordoba, Spain, ²⁶Santa Cristina Hospital, Madrid, Spain, ²⁷Hospital Universitario del Henares, Madrid, Spain, ²⁸Hospital Royo Villanova, Zaragoza, Spain
Background/Purpose: To describe demographic characteristics, efficacy and safety of BLM since its approval in SLE patients in a real-world setting. Methods: Descriptive, retrospective, multicenter study…
Abstract Number: 1431 • ACR Convergence 2022
Impact of Tofacitinib on Fracture Risk in Rheumatoid Arthritis
Karen E Hansen¹, Mahta Mortezavi², Edward Nagy³, Cunshan Wang⁴, Carol A Connell⁴, Zaher Radi⁵, Heather J Litman⁶, Giovanni Adami⁷ and Maurizio Rossini⁷, ¹Rheumatology Division, Department of Medicine, University of Wisconsin School of Medicine and Public Health, Madison, WI, ²Pfizer Inc, New York, NY, ³Pfizer Ltd, Tadworth, United Kingdom, ⁴Pfizer Inc, Groton, CT, ⁵Pfizer Inc., Cambridge, MA, ⁶CorEvitas, LLC, Waltham, MA, ⁷Rheumatology Unit, Department of Medicine, University of Verona, Verona, Italy
Background/Purpose: Preclinical data suggest that tofacitinib stimulates osteoblast function and would have a protective effect on bone health and fracture risk in RA.1 We report…
Abstract Number: 0422 • ACR Convergence 2022
Efficacy and Safety of Secukinumab in the Treatment of Axial Spondyloarthritis: Real-Life Data from TURKBIO Cohort
Semih Gulle¹, Ali Karakas¹, Gercek Can², Soner Senel³, Sedat Capar⁴, Huseyin ediz dalkilic⁵, Servet Akar⁶, Suleyman Serdar Koca⁷, Abdurrahman Tufan⁸, Ayten Yazici⁹, Sema Yilmaz¹⁰, Nevsun Inanc¹¹, Merih Birlik¹, Dilek Solmaz¹², Ayse Cefle⁹, Berna Goker¹³, Servet Yolbas¹⁴, Niels Steen Krough¹⁵, Neslihan Yilmaz¹⁶, Sukran Erten¹⁷, Cemal Bes¹⁸, Ozgul Soysal¹⁹, Mehmet Akif Ozturk¹³, Seminur Haznedaroglu¹³, Sule Yavuz¹⁶, Haner Direskeneli²⁰, Fatoş Onen²¹ and Ismail Sari²², ¹Dokuz Eylul University School of Medicine Division of Rheumatology, Izmir, Turkey, ²Dokuz Eylul University School of Medicine Division of Rheumatology, Istanbul, Turkey, ³Erciyes University School of Medicine Division of Rheumatology, Kayseri, Turkey, ⁴Dokuz Eylul University Faculty of Science Department of Statistics, Izmir, Turkey, ⁵Uludag University School of Medicine Division of Rheumatology, Bursa, Turkey, ⁶Izmir Katip Celebi University School of Medicine, Izmir, Turkey, ⁷Firat University School of Medicine Division of Rheumatology, Elazıg, Turkey, ⁸Gazi University Medical Faculty Hospital, Istanbul, Turkey, ⁹Kocaeli University School of Medicine Division of Rheumatology, Kocaeli, Turkey, ¹⁰Selcuk University School of Medicine Division of Rheumatology, Konya, Turkey, ¹¹Marmara University School of Medicine, Division of Rheumatology, Istanbul, Turkey, ¹²Kâtip Celebi University School of Medicine Division of Rheumatology, Izmir, Turkey, ¹³Gazi University School of Medicine Division of Rheumatology, Ankara, Turkey, ¹⁴Inonu University School of Medicine Division of Rheumatology, Malatya, Turkey, ¹⁵Zitelab Aps, Kopenhag, Denmark, ¹⁶Demiroglu Bilim University School of Medicine Division of Rheumatology, Istanbul, Turkey, ¹⁷Yildirim Beyazit University School of Medicine Division of Rheumatology, Ankara, Turkey, ¹⁸Basaksehir Cam and Sakura ospital, Division of Rheumatology, Istanbul, Turkey, ¹⁹Celal Bayar University, School of Medicine Division of Rheumatology, Manisa, Turkey, ²⁰Marmara University School of Medicine Division of Rheumatology, Istanbul, Turkey, ²¹Dokuz Eylul University, Faculty of Medicine, Rheumatology, İzmir, Turkey, ²²Dokuz Eylul University School of Medicine Division of Rheumatology, İzmir, Turkey
Background/Purpose: In this study, we aimed to evaluate the results of secukinumab treatment in patients with Axial Spondyloarthritis (AxSpA) who were enrolled in the TURKBIO…
Abstract Number: 1522 • ACR Convergence 2022
The Collaborative National Quality and Efficacy Registry for Scleroderma: Association of Medication Use on Gastrointestinal Tract Symptoms in Early Disease
Sarah Luebker¹, Tracy Frech¹, Shervin Assassi², Jessica Gordon³, Elana Bernstein⁴, Virginia Steen⁵, Ami Shah⁶, Laura Hummers⁷, Carrie Richardson⁸, Dinesh Khanna⁹, Flavia Castelino¹⁰, Lorinda Chung¹¹, Faye Hant¹², Vicki Shanmugam¹³, John VanBuren¹⁴, Jessica Alvey¹⁴, Monica Harding¹⁴, Luke Evnin¹⁵ and Nora Sandorfi¹⁶, ¹Vanderbilt University Medical Center, Nashville, TN, ²McGovern Medical School, University of Texas, Houston, TX, ³Hospital for Special Surgery, New York, NY, ⁴Columbia University, New York, NY, ⁵Georgetown University School of Medicine, Washington, DC, ⁶Johns Hopkins Rheumatology, Baltimore, MD, ⁷Johns Hopkins Univerisity, Baltimore, MD, ⁸Northwestern University, Chicago, IL, ⁹Division of Rheumatology, Department of Internal Medicine, Scleroderma Program, University of Michigan, Ann Arbor, MI, ¹⁰Massachusetts General Hospital, Boston, MA, ¹¹Stanford University, Stanford, CA, ¹²Medical University of South Carolina, Charleston, SC, ¹³George Washington University, Washington, DC, ¹⁴University of Utah, Salt Lake City, UT, ¹⁵Scleroderma Research Foundation, Brisbane, CA, ¹⁶University of Pennsylvania, Philadelphia, PA
Background/Purpose: Gastrointestinal tract (GIT) symptoms are common amongst systemic sclerosis (SSc) patients.1 The Scleroderma Clinical Trials Consortium University of California Los Angeles Gastrointestinal Tract Questionnaire…
Abstract Number: 0433 • ACR Convergence 2022
Clustering of Anti-neutrophil Cytoplasmic Antibody-associated Vasculitis – Using a Pre-processed Harmonised Dataset
Karl Gisslander¹, Arthur White², Mårten Segelmark³, Mark Little² and Aladdin Mohammad⁴, ¹Lund University, Lund, Sweden, ²Trinity College, Dublin, Ireland, ³Nephrology, Department of Clinical Sciences, Lund University, Lund, Sweden, ⁴Rheumatology, Department of Clinical Sciences, Lund University, Lund, Sweden
Background/Purpose: The sub-classification of anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) has been a long-standing debate. Unsupervised learning has previously been used for partitioning of phenotypic…
Abstract Number: 1679 • ACR Convergence 2022
The Childhood Arthritis and Rheumatology Research Alliance Start Time Optimization of Biologic Therapy in Polyarticular JIA (STOP-JIA) Study: Three-Year Outcomes
Yukiko Kimura¹, Sarah Ringold², George Tomlinson³, Laura Schanberg⁴, Anne Dennos⁵, MaryEllen Riordan⁶, Vincent Del Gaizo⁷, Katherine Murphy⁸, Pamela Weiss⁹, Brian Feldman¹⁰, Mei Sing Ong¹¹ and Marc Natter¹², ¹Hackensack Meridian Health, New York, NY, ²Janssen, Seattle, WA, ³University of Toronto, Toronto, ON, Canada, ⁴Duke University Medical Center, Durham, NC, ⁵Duke University, Durham, NC, ⁶Hackensack Meridian Health, Hackensack, NJ, ⁷CARRA, Inc, Washington, DC, ⁸CARRA, Inc, New Orleans, LA, ⁹Children's Hospital of Philadelphia, Glen Mills, PA, ¹⁰Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute; Department of Paediatrics, University of Toronto, Toronto, ON, Canada, ¹¹Harvard Pilgrim Institute, Boston, MA, ¹²Boston Children's Hospital, Boston, MA
Background/Purpose: The CARRA STOP-JIA study compared the effectiveness of the CARRA Consensus Treatment Plans (CTPs) in achieving clinically inactive disease (CID) in untreated polyarticular JIA…
Abstract Number: 0820 • ACR Convergence 2022
Therapeutic Practices and Outcomes of Chronic Sarcoidosis Arthropathy in the United States: A Nationwide Registry Study
Diala Alawneh¹, Moustafa Younis², Bashar Alzghoul², Christian Ascoli¹, Tricha Shivas³, Mary McGowan³, Khaldoon Alawneh⁴, Divya Patel², Israel Rubinstein¹ and Nadera Sweiss¹, ¹University of Illinois at Chicago, Chicago, IL, ²University of Florida, Gainesville, FL, ³Foundation for Sarcoidosis Research, Chicago, IL, ⁴Jordan University of Science and Technology, Irbid, Jordan
Background/Purpose: Chronic arthropathy is a rare manifestation of sarcoidosis reported in only 0.2% of patients. However, treatment is challenging because no general consensus regarding appropriate…
Abstract Number: 1752 • ACR Convergence 2022
Cancer Risk in Patients with Rheumatic Diseases Exposed to Different Biologic and Targeted Synthetic DMARDs in Real World Clinical Practice: Data from BIOBADASER
Isabel Castrejon¹, Juan Molina², Carolina Perez-Garcia³, Paloma Vela-Casampere⁴, Cesar Diaz-Torne⁵, Cristina Bohorquez⁶, Juan Maria Blanco-Madrigal⁷ and Fernando Sanchez-Alonso⁸, ¹Hospital Universitario Gregorio Marañón, Madrid, Spain, ²Hospital General Universitario Gregorio Marañón, Madrid, Spain, ³Department of Rheumatology, Hospital del Mar, Barcelona, Spain, ⁴Hospital General Universitario Alicante, Alicante, Spain, ⁵Department of Rheumatology, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain, ⁶University Hospital Príncipe de Asturias, Immune System Diseases-Rheumatology Service, Alcalá de Henares, Madrid, Spain, ⁷Department of Rheumatology, Hospital de Basurto, Bilbao, Spain, ⁸Instituto de Investigación Sanitaria Gregorio Marañón (IiSGM), Madrid, Spain
Background/Purpose: Extensive evidence has confirmed no increased risk of cancer associated to either conventional synthetic DMARDs or anti-TNF in patients with rheumatic diseases. The risk…

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