Abstracts tagged "registry"

Abstract Number: 0321 • ACR Convergence 2020
Outcome Measures in Psoriatic Arthritis Registries Are Very Heterogeneous: A Systematic Literature Review of 27 Registries, or 16183 Patients
Krystel Aouad¹, Georgia Moysidou¹, Antsa Rakotozafiarison¹, Bruno Fautrel² and Laure Gossec¹, ¹Sorbonne University, INSERM; Pitié-Salpêtrière Hospital, Paris, Ile-de-France, France, ²Sorbonne University, INSERM, IPLES; Pitié-Salpêtrière Hospital, Paris, Ile-de-France, France
Background/Purpose: Psoriatic arthritis (PsA) is a multidimensional inflammatory disease for which multiple outcome measures can be used, to assess disease activity e.g. through composite scores,…
Abstract Number: 0884 • ACR Convergence 2020
Comparison of Disease Control Thresholds in Psoriatic Arthritis: Results from the Corrona Psoriatic Arthritis/Spondyloarthritis Registry
Philip Mease¹, Robert McLean², Taylor Blachley², Laura Anatale-Tardiff³, Christopher Saffore⁴, Patrick Zueger⁴ and Alexis Ogdie⁵, ¹Seattle Rheumatology Associates, P.L.L.C., Seattle, WA, ²Corrona, LLC, Waltham, MA, ³Corrona, LLC, Waltham, ⁴AbbVie Inc., North Chicago, IL, ⁵University of Pennsylvania, Philadelphia, PA
Background/Purpose: There is no single accepted measure of low/minimal disease activity (LDA/MDA) for patients with PsA; thus, describing the characteristics of real-world patients meeting different…
Abstract Number: 1962 • ACR Convergence 2020
Utilization of Telehealth Among Patients with Rheumatic Diseases in the Early Months of the COVID-19 Pandemic
Kristin Wipfler¹, Yomei Shaw², Teresa Simon³, Adam Cornish¹, Patricia Katz⁴ and Kaleb Michaud⁵, ¹FORWARD, The National Databank for Rheumatic Diseases, Omaha, NE, ²FORWARD, The National Databank for Rheumatic Diseases, East Lansing, MI, ³Bristol-Myers Squibb Company (at time of analysis), Princeton, NJ, ⁴University of California, San Francisco, Novato, CA, ⁵University of Nebraska Medical Center, Omaha, NE
Background/Purpose: Many health care providers replaced in-person clinical visits with telehealth visits or expanded their telehealth offerings due to the COVID-19 pandemic. We sought to…
Abstract Number: 0390 • ACR Convergence 2020
Baseline Characteristics of Systemic Sclerosis (SSc) Patients with Restrictive Lung Disease in a Multi-Center United States Based Longitudinal Registry
Flavia Castelino¹, John VanBuren², Emily Startup², Shervin Assassi³, Elana Bernstein⁴, Lorinda Chung⁵, Chase Correia⁶, Luke Evnin⁷, Tracy Frech⁸, Jessica Gordon⁹, Faye Hant¹⁰, Laura Hummers¹¹, Dinesh Khanna¹², Nora Sandorfi¹³, Ami Shah¹⁴, Victoria Shanmugam¹⁵ and Virginia Steen¹⁶, ¹Massachusetts General Hospital/Harvard Medical School, Boston, MA, ²University of Utah, Salt Lake City, UT, ³University of Texas Houston McGovern Medical School, Division of Rheumatology and Clinical Immunogenetics, Houston, TX, ⁴Columbia University, New York, NY, ⁵Stanford University School of Medicine and Palo Alto VA Health Care System, Palo Alto, CA, ⁶Northwestern University, Chicago, IL, ⁷Scleroderma Research Foundation, Brisbane, CA, ⁸University of Utah and Salt Lake Veterans Affair Medical Center, Salt Lake City, UT, ⁹Hospital for Special Surgery, New York, NY, ¹⁰Medical University of South Carolina, Charleston, SC, ¹¹Johns Hopkins Univerisity, Ellicott City, MD, ¹²University of Michigan, Ann Arbor, MI, ¹³University of Pennsylvania, Philadelphia, PA, ¹⁴Johns Hopkins University School of Medicine, Ellicott City, MD, ¹⁵The George Washington University, Washington, DC, ¹⁶Division of Rheumatology, Department of Medicine, MedStar Georgetown University Hospital, Washington, DC
Background/Purpose: Interstitial lung disease (ILD) is the leading cause of death in SSc. Several international observational studies have evaluated characteristics of ILD in their SSc patient…
Abstract Number: 1009 • ACR Convergence 2020
Missing Data and Multiple Imputation in Rheumatoid Arthritis Registries Using Sequential Random Forest Method
Ahmed Al-Saber¹, Adeeba Al-Herz², Jiazhu Pan¹, Khulood Saleh³, Adel Al-Awadhi⁴, Waleed Al-Kandari³, Eman Hasan⁵, Aqeel Ghanem⁶, Mohammed Hussain⁵, Yaser Ali⁷, Ebrahim Nahar⁷, Ahmad Alenizi⁸, Sawsan Hayat⁷, Fatemah Abutiban⁹, Ali Aldei⁵, Amjad Alkadi¹⁰, Heba Alhajeri⁷, Husain Behbehani³, Naser Alhadhood³, Khaled Mokaddem⁵, Ahmed Khadrawy³, Ammad Fazal³, Agaz Zaman⁷, Ghada Mazloum⁷, Youssef Bartella⁵, Sally Hamed⁵ and Ramia Alsouk⁸, ¹Department of Mathematics and Statistics, University of Strathclyde, Glasgow, United Kingdom, ²Al-Amiri Hospital, Kuwait City, Kuwait, ³Farwania Hosiptal, Farwania, Kuwait, ⁴Faculty of Medicine, Kuwait University, Jabria, Kuwait, ⁵Al-Amiri Hospital, Kuwait, Kuwait, ⁶Mubarak Al-Kabeer Hospital, Kuwait City, Kuwait, ⁷Mubarak Al-Kabeer Hospital, Hawally, Kuwait, ⁸Jahra Hospital, Jahra, Kuwait, ⁹Rheumatology Unit, Department of Medicine, Jaber Alahmed Alsabah hospital, State of Kuwait, Jahra, Kuwait, ¹⁰Sabah Hospital, Kuwait, Kuwait
Background/Purpose: Missing data in clinical epidemiological researches violate the intention to treat principle, reduce statistical power and can induce bias if they are related to…
Abstract Number: 1978 • ACR Convergence 2020
Prevalence and Factors Associated with Patient-Physician Discordance Among RA Patients Initiating Advanced Therapy
Jeffrey Curtis¹, Rose Medeiros², I-Heng Lee³, Rachel Mackey⁴, Richard Haubrich³, Hao Hu⁵, Jeffrey Greenberg⁶ and Alicea Wu³, ¹Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham, Birmingham, AL, ²Corrona, LLC, Waltham, MA, ³Gilead Sciences, Foster City, CA, ⁴Corrona, LLC and University of Pittsburgh, Waltham, MA, ⁵Gilead Sciences, Inc., Foster City, CA, ⁶Corrona, LLC and NYU School of Medicine, Waltham, MA
Background/Purpose: Some rheumatoid arthritis (RA) patients rate their disease activity worse than their physician does, but recent prevalence and factors associated with such discordance have…
Abstract Number: 047 • 2020 Pediatric Rheumatology Symposium
Patients with Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry: Clinical Characteristics and Inception Cohorts
Yongdong Zhao¹, Timothy Beukelman ², Yukiko Kimura ³, Mara Becker ⁴, Sarah Ringold ⁵, Anne Dennos ⁶ and Laura Schanberg ⁷ for the CARRA investigators, ¹University of Washington, Seattle, ²University of Alabama at Birmingham, Birmingham, ³Hackensack Meridian School of Medicine, Hackensack, ⁴Duke University Medical Center/Duke Clinical Research Institute, Chapel Hill, ⁵Seattle Children's, Seattle, ⁶Duke University, Durham, ⁷Duke University Hospital, DURHAM
Background/Purpose: In July 2015, the CARRA Registry was re-established as a multi-center observational study that collects essential data from patients with childhood-onset rheumatic diseases. The…
Abstract Number: 074 • 2020 Pediatric Rheumatology Symposium
Establishment of a Registry for Juvenile Idiopathic Arthritis (JIA) Patients in South Australia (SA): Focus on Patient Reported Outcome Measures (PROMs) and Experiences (PREMs)
Ming Min ¹, Catherine Gibson ², Mark Friswell³, Tania Crotti ⁴ and Christina Boros ⁵, ¹Adelaide Medical School, Faculty of Health and Medical Sciences, University of Adelaide, North Adelaide, South Australia, Australia, ²Women's and Children's Health Network, North Adelaide, South Australia, Australia, ³Women’s and Children‘s Hospital Department of Rheumatology, Adelaide, South Australia, Australia, ⁴Adelaide Medical School, Faculty of Health and Medical Sciences, University of Adelaide, Adelaide, South Australia, Australia, ⁵Women’s and Children‘s Hospital Department of Rheumatology, Adelaide, Australia
Background/Purpose: Patient outcomes and experiences are key components in the measurement of overall health outcomes in JIA and can be measured by validated PROMs and…
Abstract Number: 087 • 2020 Pediatric Rheumatology Symposium
Standardizing Care and Fostering Systemic Autoinflammatory Disease (SAID) Research Through the CARRA Autoinflammatory Disease Network
Grant Schulert¹, Julie Cherian ², Theresa Wampler Muskardin ³, Marinka Twilt ⁴, Shoghik Akoghlanian ⁵, Gil Amarilyo ⁶, Dilan Dissanayake ⁷, Karen Durrant ⁸, Polly Ferguson ⁹, Maria Gutierrez ¹⁰, Liora Harel ¹¹, Jonathan Hausmann ¹², Merav Heshin Bekenstein ¹³, Ronald Laxer ⁷, Aleksander Lenert ⁹, Suzanne Li ¹⁴, Greg Licameli ¹⁵, Geraldina Lionetti ¹⁶, Ian Michelow ¹⁷, Lakshmi Moorthy ¹⁸, Evan Propst ¹⁹, Vivian Saper ²⁰, Hemalatha Srinivasalu ²¹, Yuriy Stepanovskiy ²², Akaluck Thatayatikom ²³, Lori Tucker ²⁴, Peter Wright ²⁵, Cagri Yildirim-Toruner ⁵, Fatma Dedeoglu ¹⁵ and Sivia Lapidus ²⁶ for the CARRA investigators, ¹Cincinnati Children's Hospital Medical Center and University of Cincinnati College of Medicine, Cincinnati, ²Stony Brook Children's Hospital, Stony Brook, ³Colton Center for Autoimmunity, NYU School of Medicine, New York, ⁴Alberta Children's Hospital, Calgary, Canada, ⁵Nationwide Children's Hospital, Columbus, ⁶Schneider Hospital, Tel Aviv University, Kibbutz Magal, Israel, ⁷The Hospital for Sick Children and University of Toronto, Toronto, Canada, ⁸Kaiser Permanente San Francisco Medical Center and Autoinflammatory Alliance, San Francisco, ⁹University of Iowa Carver College of Medicine, Iowa City, ¹⁰Johns Hopkins University School of Medicine, Baltimore, ¹¹Schneider Hospital, Tel Aviv University, Petah-Tiqva, Israel, ¹²Division of Immunology, Boston Children's Hospital; Rheumatology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, ¹³Dana Children’s Hospital of Tel Aviv Medical Center, Binyamina, Israel, ¹⁴Joseph M. Sanzari Children's Hospital Hackensack Meridian Health, Hackensack, ¹⁵Boston Children's Hospital, Boston, ¹⁶UCSF Benioff Children’s Hospital, Oakland, ¹⁷Alpert Medical School, Brown University, Providence, ¹⁸Rutgers Robert Wood Johnson Medical School, Metuchen, ¹⁹The Hospital for Sick Children, University of Toronto, Toronto, Canada, ²⁰Stanford University, Los Altos, ²¹Children's National Medical Center, Washington, ²²Shupyk National Medical Academy of Postgraduate Education, Kiev, ²³University of Florida, Gainesville, ²⁴BC Children's Hospital, Vancouver, British Columbia, Canada, ²⁵Dartmouth-Hitchcock Medical Center, Lebanon, ²⁶The Joseph M. Sanzari Children's Hospital, Hackensack Meridian Health, Maplewood
Background/Purpose: International registries have significantly enhanced the understanding of the genetics, phenotype, prognosis, and treatment of Systemic Autoinflammatory Diseases (SAIDs) that could be further augmented…
Abstract Number: 116 • 2020 Pediatric Rheumatology Symposium
Patterns of Etanercept Use in the Childhood Arthritis and Rheumatology Research Alliance Juvenile Idiopathic Arthritis Registry
Natalie Shiff¹, Aimee Lougee ², Roland Matsouaka ², David Collier ³, Yukiko Kimura ⁴, Dax Rumsey ⁵, Jennifer Schenfeld ⁶, Scott Stryker ⁷, Marinka Twilt ⁸ and Timothy Beukelman ⁹, ¹Florida, Gainesville, ²Duke University, Durham, ³Amgen, Thousand Oaks, ⁴Hackensack Meridian School of Medicine, Hackensack, ⁵University of Alberta, Edmonton, Canada, ⁶Amgen, Long Beach, ⁷Amgen, Inc, San Francisco, ⁸Alberta Children's Hospital, Calgary, Canada, ⁹University of Alabama at Birmingham, Birmingham
Background/Purpose: Etanercept (ETN) is an anti-tumor necrosis factor (anti-TNF) therapy that is FDA approved for the treatment of polyarticular juvenile idiopathic arthritis (JIA). This study…
Abstract Number: 175 • 2020 Pediatric Rheumatology Symposium
Application of Juvenile Idiopathic Arthritis Treatment Guidelines and Factors Associated with Increased Likelihood of Intra-articular Corticosteroid Administration
Erin Balay¹, Jennifer Weiss ², Y. Ingrid Goh ³, Nathan Rubin ⁴ and Danielle Bullock ⁴, ¹University of Minnesota, saint paul, ²Hackensack University Medical Center, Hackensack, ³The Hospital for Sick Children, Toronto, Canada, ⁴University of Minnesota, Minneapolis
Background/Purpose: Juvenile idiopathic arthritis (JIA) is a chronic childhood disease which can result in debilitating arthritis. The 2011 ACR JIA treatment guidelines recommend intra-articular corticosteroid…
Abstract Number: 2477 • 2019 ACR/ARP Annual Meeting
Burden of Disease at Treatment Initiation Among Biologic-Naïve Patients with Oligoarticular versus Polyarticular Psoriatic Arthritis in the Corrona Psoriatic Arthritis/Spondyloarthritis Registry
Alexis Ogdie¹, Mei Liu ², Meghan Glynn ³, Kelechi Emeanuru ², Leslie Harrold ⁴, Sven Richter ⁵, Benoit Guerette ⁵ and Philip Mease ⁶, ¹Department of Medicine and Rheumatology and Department of Epidemiology and Biostatistics, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, ²Corrona, LLC, Waltham, MA, ³Corrona, LLC, Waltham, ⁴Corrona, LLC and University of Massachusetts Medical School, Worcester, MA, ⁵Celgene Corporation, Summit, ⁶Swedish Medical Center/Providence St Joseph Health, and University of Washington, Seattle, WA
Background/Purpose: Oligoarticular PsA accounts for ≈50% of PsA worldwide, but only a paucity of data describes disease burden among these patients. The Corrona PsA/SpA Registry,…
Abstract Number: 2722 • 2019 ACR/ARP Annual Meeting
The down Syndrome Arthropathy Cohort in the New Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry: Clinical Characteristics, Treatment and Outcomes
Jordan Jones¹, Daniel J. Lovell ², Chelsey Smith ³ and Mara Becker ⁴, ¹Children's Mercy Kansas City, Kansas City, MO, ²Pediatric Rheumatology Collaborative Study Group (PRCSG), Cincinnati Children’s Hospital Medical Center, Cincinnati, ³Children's Mercy Kansas City, Kansas, MO, ⁴Duke Children's Hospital, Durham, NC
Background/Purpose: Down syndrome arthropathy (DA) is under-recognized with a 19-month average delay in diagnosis (1). The majority present with polyarticular, rheumatoid factor (RF) and anti-nuclear…
Abstract Number: 2850 • 2019 ACR/ARP Annual Meeting
Exploring Heterogeneity in Rheumatoid Arthritis: Outcomes up to 4 Years of Follow-Up in Patient Clusters Identified by Data-driven Analysis of the BRASS Registry
Jeffrey Curtis¹, Michael Weinblatt ², Kenneth Saag ¹, Vivian Bykerk ³, Christina Charles-Schoeman ⁴, Stefano Fiore ⁵, Gregory St John ⁶, Toshio Kimura ⁷, Shen Zheng ⁵, Clifton Bingham ⁸, Grace Wright ⁹, Martin Bergman ¹⁰, Kamala Nola ¹¹, Daniel Furst ⁴ and Nancy Shadick ², ¹University of Alabama at Birmingham, Birmingham, AL, ²Brigham and Women's Hospital, Boston, MA, ³Hospital for Special Surgery, New York City, NY, ⁴University of California, Los Angeles, CA, ⁵Sanofi Genzyme, Bridgewater, NJ, ⁶Regeneron Pharmaceuticals, Inc., Tarrytown, NY, ⁷Regeneron Pharmaceuticals, Inc, Tarrytown, NY, ⁸Johns Hopkins University, Baltimore, MD, ⁹Private Practice, New York City, NY, ¹⁰Drexel University College of Medicine, Stockholm, Sweden, ¹¹Lipscomb University College of Pharmacy & Health Sciences, Nashville, TN
Background/Purpose: Patients with rheumatoid arthritis (RA) may share characteristics that relate to their future outcomes. We investigated clinical outcomes over a 4-year follow-up period in…
Abstract Number: 2908 • 2019 ACR/ARP Annual Meeting
Remission in Patients with Rheumatoid Arthritis Receiving Triple Therapy Compared to Biological Therapy – A Swedish Nationwide Register Study
Hanna Källmark¹, Jon Einarsson ², Jan-Åke Nilsson ³ and Meliha Kapetanovic ², ¹Lund University, Lund, Sweden, ²Lund University, Skane University Hospital, Department of Clinical Sciences Lund, Section of Rheumatology, Lund and Malmö, Sweden, Lund, Sweden, ³Skane University Hospital, Lund and Malmö, Sweden, Lund, Sweden
Background/Purpose: Current treatment guidelines for rheumatoid arthritis (RA) recommend a treat-to-target approach with early treatment initiation of disease-modifying antirheumatic drugs (DMARDs), most commonly methotrexate (MTX),…

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