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: 115 • 2023 Pediatric Rheumatology Symposium
Development of an Electronic Clinical Phenotype to Identify Potential Study Subjects with Juvenile Arthritis
Alysha Taxter¹, Marc Natter², Min-Lee Chang², Laura Schanberg³, Valarie Morrow⁴, Eveline Wu⁵, Tedryl Bumpass⁴, Alex Fist⁴, Meg Waite⁶, Vincent Del Gaizo⁷, Melanie Kohlheim⁷ and CARRA Registry Investigators⁷, ¹Nationwide Children's Hospital, Columbus, OH, ²Boston Children's Hospital, Boston, MA, ³Duke University Medical Center, Durham, NC, ⁴Duke University, Durham, NC, ⁵UNC Chapel Hill, Chapel Hill, NC, ⁶Boston Children's Hospital, Boston, MA, ⁷CARRA, Washington, DC
Background/Purpose: The LIMIT-JIA trial is the first study of the use of biologic therapy to prevent disease extension in children with newly diagnosed, uncomplicated, oligo-articular…
Abstract Number: 120 • 2023 Pediatric Rheumatology Symposium
The Brazilian Registry of Juvenile Dermatomyositis (JDM): I- Onset Clinical Features and Disease Activity Scores by DAS-20 over 2-Years-Follow Up
Beatriz Carneiro¹, Adriana Elias¹, Teresa Robazzi², Ana Julia Moraes³, Sheila Oliveira⁴, Flavio Sztajnbok⁵, Luciana Carvalho⁶, Luciana Marques⁷, Silvana Sacchetti⁸, Maria Teresa Terreri⁹, Simone Appenzelle¹⁰, Roberto Marini¹¹, Andre Cavalcante¹², Marcia Bandeira¹³, Cristina Magalhaes¹⁴, Melissa Fraga¹⁵, Iloite Scheibel¹⁶, Isabela Daud¹, Darcisio Antonio¹⁷, Claudio Len¹⁸, Clovis Silva¹⁹, Taciana Fernandes¹⁷ and Claudia Magalhaes²⁰, ¹Instituto da Criança - Universidade de São Paulo (USP), São Paulo, Brazil, ²Universidade Federal da Bahia, Brazil, ³Universidade Federal do Para, Brazil, ⁴Universidade Federal do Rio de janeiro, Rio de Janeiro, ⁵Universidade Estadual do Rio de Janeiro, Rio de Janeiro, Brazil, ⁶Universidade de Sao Paulo- Ribeirao Preto, São Paulo, Brazil, ⁷Hospital Albert Sabin, Brazil, ⁸Santa Casa de Sao Paulo, Brazil, ⁹UNIFESP, São Paulo, Brazil, ¹⁰University of Campinas, Campinas, Sao Paulo, Brazil, ¹¹UNICAMP, São Paulo, Brazil, ¹²Hospital Materno-Infantil de Goiania, Brazil, ¹³Hospital Pequeno Principe- Curitiba, Brazil, ¹⁴Hospital Jose de Alencar - Brasilia, Brazil, ¹⁵Hospital Darcy Vargas, Brazil, ¹⁶Hospital Conceição de Porto Alegre, Brazil, ¹⁷Universidade Estadual Paulista (UNESP) Botucatu, Brazil, ¹⁸Universidade Federal de São Paulo - Unifesp, São Paulo, Brazil, ¹⁹Universidade de São Paulo, São Paulo, Brazil, ²⁰São Paulo State University, Pediatric Rheumatology Division, Botucatu, Brazil
Background/Purpose: A national registry was set up, enrolling new onset JDM cases in 18 hospitals, during 3-years (2015-2018) with 2-years follow up, in a low…
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: 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…
Abstract Number: 0850 • ACR Convergence 2022
Outcomes of Patients with Juvenile Idiopathic Arthritis Following Failure of Initial Tumor Necrosis Factor Inhibitor Medication in the Childhood Arthritis and Rheumatology Research Alliance Registry
Melissa Mannion¹, Shahla Amin², Stephen Balevic³, Colleen Correll⁴, Timothy Beukelman¹ and , for the CARRA Registry Investigators⁵, ¹University of Alabama at Birmingham, Birmingham, AL, ²Childhood Arthritis and Rheumatology Research Alliance, Washington, DC, ³Duke University, Durham, NC, ⁴University of Minnesota, Minneapolis, MN, ⁵CARRA, Washington, DC
Background/Purpose: Tumor necrosis factor inhibitors (TNFi) are the most commonly used first biologics to treat juvenile idiopathic arthritis (JIA), but it is unknown what subsequent…
Abstract Number: 1842 • ACR Convergence 2022
Vaccination in Patients with Autoinflammatory Periodic Syndromes Under Canakinumab – Safety Data Interim Analysis of the RELIANCE Registry
Jasmin B. Kuemmerle-Deschner¹, Joerg Henes², Birgit Kortus-Goetze³, Tilmann Kallinich⁴, Prasad T. Oommen⁵, Juergen Rech⁶, Tobias Krickau⁷, Frank Weller-Heinemann⁸, Gerd Horneff⁹, Ales Janda¹⁰, Ivan Foeldvari¹¹, Catharina Schuetz¹², Frank Dressler¹³, Michael Borte¹⁴, Markus Hufnagel¹⁵, Florian Meier¹⁶, Michael Fiene¹⁷, Julia Weber-Arden¹⁸ and Norbert Blank¹⁹, ¹Department of Pediatrics, Division of Pediatric Rheumatology, University Hospital Tübingen, Tübingen, Germany, ²Center for Interdisciplinary Clinical Immunology, Rheumatology and Auto-inflammatory Diseases (INDIRA), University Hospital Tübingen, Tübingen, Germany, ³Division of Nephrology, University of Marburg, Marburg, Germany, ⁴Charité - Universitätsmedizin Berlin, Nuremberg, Germany, ⁵Clinic of Pediatric Hematology, Oncology and Clinical Immunology, Heinrich-Heine-University Duesseldorf, Duesseldorf, Germany, ⁶University Clinic Erlangen, Erlangen, Germany, ⁷Friedrich-Alexander Universität Erlangen-Nürnberg (FAU), Pediatrics, Erlangen, Germany, ⁸Klinikum Bremen-Mitte, Prof. Hess Kinderklinik, Bremen, Germany, ⁹Pediatrics, Asklepios Klinik Sankt Augustin GmbH, Sankt Augustin, Germany, ¹⁰Department of Pediatrics, University Hospital Ulm, Ulm, Germany, ¹¹Hamburger Zentrum für Kinder- und Jugendrheumatologie, Hamburg, Germany, ¹²Pediatrics, Medizinische Fakultaet Carl Gustav Carus, Technische Universitaet Dresden, Dresden, Germany, ¹³Division of Pediatric Pneumology, Allergology and Neonatology, Hannover Medical School, Hannover, Germany, ¹⁴ImmunoDeficiencyCenter Leipzig (IDCL), Hospital St. Georg gGmbH Leipzig, Germany, Leipzig, Sachsen, Germany, ¹⁵Division of Pediatric Infectious Diseases and Rheumatology, Department of Pediatrics and Adolescent Medicine, University Hospital Medical Center Freiburg, Medical Faculty, University of Freiburg, Freiburg, Germany, ¹⁶Division of Rheumatology, University Hospital Frankfurt, Goethe University, Frankfurt am Main, Germany, and Fraunhofer Institute for Molecular Biology and Applied Ecology IME, Project Group Translational Medicine and Pharmacology TMP, Frankfurt, Germany, ¹⁷Rheumatology Center Greifswald, Greifswald, Germany, ¹⁸Novartis Pharma GmbH, Nuernberg, Germany, ¹⁹Rheumatology, University Hospital Heidelberg, Heidelberg, Germany
Background/Purpose: Treatment of autoinflammatory periodic syndromes with the interleukin-1β inhibitor canakinumab (CAN) has been shown to be safe and effective in clinical trials and in…
Abstract Number: 0855 • ACR Convergence 2022
Change in Short Term Outcomes Following Tolerated Disease Activity Level for Individuals with Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry
Melissa Mannion¹, Fenglong Xie¹, Timothy Beukelman¹, Jeffrey Curtis² and , for the CARRA Registry Investigators³, ¹University of Alabama at Birmingham, Birmingham, AL, ²University of Alabama at Birmingham, Hoover, AL, ³CARRA, Washington, DC
Background/Purpose: Current recommendations suggest treatment escalation for juvenile idiopathic arthritis (JIA) until the disease activity target is reached, ideally inactive or low disease activity. Our…
Abstract Number: 1992 • ACR Convergence 2022
Burden of Pain for Patients in the CorEvitasTM Rheumatoid Arthritis Registry
Joshua Baker¹, J Morel Symons², Jud C Janak³, Page Moore³, Elizabeth Kohl³, Bernice Gershenson³, Oksana Pugach³, Dave Webb⁴, Alan A Martin⁴, Didier Saurigny⁵ and Marguerite Bracher⁵, ¹University of Pennsylvania and Corporal Michael J. Crescenz VA Medical Center, Philadelphia, ²GlaxoSmithKline, Collegeville, PA, ³CorEvitas, LLC, Waltham, MA, ⁴GlaxoSmithKline, Brentford, United Kingdom, ⁵GlaxoSmithKline, Stevenage, United Kingdom
Background/Purpose: Pain is a hallmark symptom of RA that impacts patients' quality of life and informs therapeutic decisions that aim to reduce joint inflammation and…
Abstract Number: 0888 • ACR Convergence 2022
Cardiovascular and Thromboembolic Events in Rheumatoid Arthritis Patients Before and After Initiation of a First Advanced Therapy. Data from the University of Sherbrooke Registry of Advanced Therapies (USRAT)
Nathalie Carrier¹, Sophie Roux², Hugues Allard-Chamard² and Gilles Boire³, ¹Centre intégré universitaire de santé et services sociaux de l'Estrie - Centre hospitalier universitaire de Sherbrooke (CIUSSS de l'Estrie - CHUS), Sherbrooke, QC, Canada, ²Université de Sherbrooke and Centre intégré universitaire de santé et services sociaux de l'Estrie - Centre hospitalier universitaire de Sherbrooke (CIUSSS de l'Estrie - CHUS), Sherbrooke, QC, Canada, ³Universite de Sherbrooke, Sherbrooke, QC, Canada
Background/Purpose: Uncontrolled inflammation in rheumatoid arthritis (RA) patients increases the risk for incident Ischemic Heart Disease (IHD) and venous thromboembolic (TE) events. Reducing inflammation using…
Abstract Number: 1999 • ACR Convergence 2022
Patient-Reported Outcomes in Rheumatoid Arthritis Correlate with Clinical Disease Activity Index Response in the Study to Accelerate Information of Molecular Signatures (AIMS)
Vibeke Strand¹, Emelly Rusli², Lixia Zhang², Christina Le-Short², Alix Arnaud², Johanna Withers³ and Sam Asgarian², ¹Stanford University School of Medicine, Stanford, CA, ²Scipher Medicine Corporation, Waltham, MA, ³Scipher Medicine Corportaion, Waltham, MA
Background/Purpose: Rheumatoid arthritis (RA) treatment response is typically defined using clinician-reported scores and patient global assessments of disease activity (PtGA), but patients may have a…

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