Abstracts tagged "registry"

Abstract Number: 0601 • ACR Convergence 2020
The “Why” of Drug Discontinuation; Clinical Review of EMR Notes for 2,545 Patients with Rheumatic Diseases
Kent Kwas Huston¹, Simon Helfgott², Scott Milligan³, Jasvinder Singh⁴, Nehad Soloman⁵, Brandon Weil³ and Colin Edgerton⁶, ¹Kansas City Physician Partners, Kansas City, MO, ²BWH- HMS, Boston, MA, ³Trio Health, Louisville, CO, ⁴University of Alabama at Birmingham, Birmingham, AL, ⁵Arizona Arthritis & Rheumatology Associates, P.C., Peoria, AZ, ⁶Articularis Healthcare, Summerville, SC
Background/Purpose: Persistence on therapy is an important consideration in rheumatic diseases. There are multiple treatment options that influence long term disease management and a better…
Abstract Number: 1142 • ACR Convergence 2020
Implementation of an Evidence-based Transition Clinic in a Pediatric Rheumatology Academic Institution
Rebecca Overbury¹, Tracy Frech², John Bohnsack³, CJ Inman¹, Sara Stern¹, Karen James¹, Erin Treemarcki⁴ and Aimee Hersh⁴, ¹University of Utah and Primary Children's Hospital, Salt Lake City, UT, ²University of Utah and Salt Lake Veterans Affair Medical Center, Salt Lake City, UT, ³University of Utah and Primary Children's Hospital, Cincinnati, OH, ⁴University of Utah and Primary Children's Hospital, Salt Lake City
Background/Purpose: Transition from pediatric to adult rheumatology care is more likely to be successful if a transition program is in place. Previously successful interventions to…
Abstract Number: 0714 • ACR Convergence 2020
Response to Abatacept in JIA Categories: Results from the PRCSG/PRINTO JIA Abatacept Phase IV Registry
Daniel J Lovell¹, Nikolay Tzaribachev², Esi Morgan³, Gabriele Simonini⁴, Thomas Griffin⁵, Ekaterina Alexeeva⁶, John Bohnsack⁷, Andrew Zeft⁸, Gerd Horneff⁹, Richard Vehe¹⁰, Valda Stanevicha¹¹, Stacey Tarvin¹², Maria Trachana¹³, Adam Huber¹⁴, Daniel Kietz¹⁵, Ilonka Orban¹⁶, Jason Dare¹⁷, Ivan Foeldvari¹⁸, Pierre Quartier¹⁹, Alyssa Dominique²⁰, Tzuyung Douglas Kou²⁰, Robert Wong²⁰, Alberto Martini²¹, Hermine Brunner³ and Nicolino Ruperto²², ¹PRCSG, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, ²Pediatric Rheumatology Research Institute, Bad Bramstedt, Germany, ³Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, ⁴Anna Meyer Children's Hospital, Firenze, Italy, ⁵Levine Children's Hospital, Charlotte, NC, ⁶Scientific Center of Children’s Health of RAMS, Moscow, Russia, ⁷University of Utah and Primary Children's Hospital, Cincinnati, OH, ⁸Cleveland Clinic, Cleveland, OH, ⁹Asklepios Clinic Sankt Augustin, Sankt Augustin, Germany, ¹⁰University of Minnesota, Minneapolis, MN, ¹¹Riga Stradins University, Riga, Latvia, ¹²Riley Children’s Health, Indianapolis, IN, ¹³Aristotle University of Thessaloniki, Thessaloníki, Greece, ¹⁴Dalhousie University, Halifax, NS, Canada, ¹⁵Children’s Hospital of Pittsburgh, Pittsburgh, PA, ¹⁶National Institute of Rheumatology and Physiotherapy, Budapest, Hungary, ¹⁷University of Arkansas for Medical Sciences, Little Rock, AR, ¹⁸Hamburg Centre for Pediatric and Adolescent Rheumatology, Hamburg, Germany, ¹⁹Necker-Enfants Malades University Hospital, Assistance Publique-Hopitaux de Paris, Paris, France, ²⁰Bristol-Myers Squibb Company, Princeton, NJ, ²¹PRINTO, Istituto Giannina Gaslini, Genova, Italy, ²²Istituto Giannina Gaslini, Genova, Italy
Background/Purpose: Abatacept, a selective T-cell co-stimulation modulator, has been demonstrated to be well tolerated and effective in JIA in 2 Phase III studies.1,2 The ongoing…
Abstract Number: 1153 • ACR Convergence 2020
Trends in Timing of Biologic Use for Treatment of Systemic Juvenile Idiopathic Arthritis in the CARRA Registry
Ginger Janow¹, Timothy Beukelman², Yukiko Kimura³, Rayfel Schneider⁴, Shalini Mohan⁵, Gail Rodich⁶ and Mary Beth Son⁷, ¹Joseph M. Sanzari Children's Hospital at Hackensack Meridian Health, Hackensack, NJ, ²University of Alabama at Birmingham, Birmingham, AL, ³Hackensack Meridian School of Medicine, Hackensack, NJ, ⁴University of Toronto, The Hospital for Sick Children, Toronto, Canada, ⁵Genentech, Inc., South San Francisco, CA, ⁶Genentech, Mill Valley, CA, ⁷Boston Children's Hospital, Boston, MA
Background/Purpose: The treatment of systemic juvenile idiopathic arthritis (SJIA) has changed dramatically over the past decade, associated with overall improvement in functional outcomes. There may…
Abstract Number: 0716 • ACR Convergence 2020
Variations in Adalimumab and Etanercept Dosing in Juvenile Idiopathic Arthritis and Their Effect on Treatment Outcome: A Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry Study
Ruud Verstegen¹, Peter Shrader², Stephen Balevic³, Timothy Beukelman⁴, Colleen Correll⁵, Anne Dennos⁶, Thomas Phillips² and Brian Feldman¹, ¹The Hospital for Sick Children, Toronto, ON, Canada, ²Duke University, Durham, ³Duke University Medical Center, Durham, ⁴University of Alabama at Birmingham, Birmingham, AL, ⁵University of Minnesota, Minneapolis, MN, ⁶Duke University, Durham, NC
Background/Purpose: Different dosing strategies of adalimumab and etanercept have been used over the past decade in the treatment of juvenile idiopathic arthritis (JIA). With regards…
Abstract Number: 1155 • ACR Convergence 2020
Long-term Safety Profile of Anakinra in Patients with Systemic Juvenile Idiopathic Arthritis
Gabriella Giancane¹, Riccardo Papa¹, Sebastiaan Vastert², Francesca Bagnasco¹, Joost Swart¹, Pierre Quartier³, Jordi Anton⁴, Isabelle Kone Paut¹, Sylvia Kamphuis¹, Troels Herlin⁵, Helga Sanner¹, Fabrizio De Benedetti⁶, Elena Tsitsami⁷, Susan Mary Nielsen¹, Estefania Moreno¹, Chiara Pallotti¹, Karin Franck-Larsson⁸, Håkan Malmström⁸, Susanna Cederholm⁹, Nico Wulffraat¹ and Nicolino Ruperto¹⁰, ¹IRCCS Istituto Giannina Gaslini, PRINTO, Genoa, Italy, Genova, Italy, ²University Medical Center Utrecht, Utrecht, Netherlands, ³Necker-Enfants Malades University Hospital, Assistance Publique-Hopitaux de Paris, Paris, France, ⁴Sant Joan de Déu Hospital, Madrid, Spain, ⁵Aarhus University Hospital, Aarhus, Denmark, ⁶Division of Rheumatology, Laboratory of Immuno-Rheumatology, IRCCS Ospedale Pediatrico Bambino Gesù, Rome, Italy, Rome, Italy, ⁷Aghia Sophia Childrens Hospital, Athens, Greece, ⁸Swedish Orphan Biovitrum, Stockholm, Sweden, ⁹Sobi, Stockholm, Sweden, ¹⁰PRINTO, Istituto Giannina Gaslini, Genova, Italy
Background/Purpose: To evaluate the long-term safety profile of anakinra in patients with systemic juvenile idiopathic arthritis (sJIA)Methods: Data from patients with sJIA according to the…
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: 183 • 2019 ACR/ARP Annual Meeting
Exploring Heterogeneity in Rheumatoid Arthritis: Patient Profiling Through Principal Component and Cluster 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: Data-driven principal component (PC) and cluster analysis has the potential to identify previously unknown patient subgroups within a rheumatoid arthritis (RA) registry to establish…
Abstract Number: 432 • 2019 ACR/ARP Annual Meeting
Does Improvement in Patient Pain and Fatigue Lag Behind Clinical Remission in Rheumatoid Arthritis Patients? Data from a Rheumatoid Arthritis Registry
Janet Pope¹, Emmanouil Rampakakis ², Mohammad Movahedi ³, Angela Cesta ⁴, John Sampalis ² and Claire Bombardier ⁴, ¹Western University, London, ON, Canada, ²JSS Medical Research, Montreal, Canada, ³Ontario Best Practices Research Initiative, Toronto General Research Institute University Health Network, Toronto, Canada, ⁴Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada
Background/Purpose: Rheumatoid arthritis (RA) patients are often not in remission due to patient global assessment of disease activity (PtGA) which is included in the formula…
Abstract Number: 1417 • 2019 ACR/ARP Annual Meeting
Long-Term Effectiveness and Safety of Infliximab, Golimumab and Golimumab-IV in Rheumatoid Arthritis Patients from a Prospective Observational Registry
Proton Rahman ¹, Philip Baer ², Denis Choquette ³, Wojciech Olszynski ⁴, Rafat Faraawi ⁵, Louis Bessette ⁶, Milton Baker ⁷, Raman Rai ⁵, John Kelsall ⁸, Larissa Lisnevskaia ⁹, Jodie Reis ⁴, Keltie Anderson ⁴, Emmanouil Rampakakis ¹⁰, Meagan Rachich ¹¹, Odalis Asin-Milan ¹¹, Allen Lehman ¹¹ and Francois Nantel¹¹, ¹Memorial University, Newfoundland, NL, Canada, ²Independent Rheumatology Practice, Scarborough, ON, Canada, ³Institut de Recherche en Rhumatologie de Montréal, University of Montreal, Québec, Canada., Montreal, QC, Canada, ⁴University of Saskatchewan, Saskatoon, SK, Canada, ⁵McMaster University, Hamilton, ON, Canada, ⁶Laval University, Laval, QC, Canada, ⁷Vancouver Island Health Authority, Victoria, BC, Canada, ⁸University of British Columbia, Vancouver, BC, Canada, ⁹Lakeridge Health Centre, Oshawa, ON, Canada, ¹⁰JSS Medical Research, Montreal, Canada, ¹¹Janssen Inc., Toronto, ON, Canada
Background/Purpose: Long-term registries are essential to evaluate new therapies in a patient population that differs from clinical trials and usually varies over time. The purpose was…
Abstract Number: 1418 • 2019 ACR/ARP Annual Meeting
Predictors of Response, Adverse Events and Treatment Retention in RA Patients Treated with Either Subcutaneous- or Intravenous- Golimumab in a Prospective, Observational Registry
Proton Rahman ¹, Rafat Faraawi ², Louis Bessette ³, Andrew Chow ⁴, Jodie Reis ⁵, Keltie Anderson ⁵, Emmanouil Rampakakis ⁶, Meagan Rachich ⁷, Odalis Asin-Milan ⁷, Allen Lehman ⁷ and Francois Nantel⁷, ¹Memorial University, Newfoundland, NL, Canada, ²McMaster University, Hamilton, ON, Canada, ³Laval University, Laval, QC, Canada, ⁴Credit Valley Rheumatology, Mississauga, ON, Canada, ⁵University of Saskatchewan, Saskatoon, SK, Canada, ⁶JSS Medical Research, Montreal, Canada, ⁷Janssen Inc., Toronto, ON, Canada
Background/Purpose: The Biologic Treatment Registry Across Canada (BioTRAC) was a prospective, observational registry that enrolled rheumatoid arthritis (RA) patients treated with either subcutaneous golimumab (GLM-SC)…

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