Abstracts tagged "registry"

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),…
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)…
Abstract Number: 1481 • 2019 ACR/ARP Annual Meeting
Real-World Use of Apremilast in Combination with Biologic Therapy in Patients with Psoriatic Arthritis: Findings from 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: Apremilast (APR), an oral phosphodiesterase 4 inhibitor, demonstrated efficacy in adult patients with active PsA despite prior use of csDMARDs and/or biologics in phase…
Abstract Number: 1542 • 2019 ACR/ARP Annual Meeting
Long-Term Effectiveness and Safety of Infliximab and Golimumab in Ankylosing Spondylitis Patients from a Prospective Observational Registry
Proton Rahman ¹, Derek Haaland ², Dalton Sholter ³, Michael Starr ⁴, Arthur Karasik ⁵, Michelle Teo ⁶, Sanjay Dixit ⁷, Ariel Masetto ⁸, Anna Jaroszynska ⁹, Pauline Boulos ⁷, Emmanouil Rampakakis ¹⁰, Meagan Rachich ¹¹, Odalis Asin-Milan ¹¹, Allen Lehman ¹¹ and Francois Nantel¹¹, ¹Memorial University, Newfoundland, NL, Canada, ²Waterside Clinic, Barrie, ON, Canada, ³Rheumatology Associates, Edmonton, AB, Canada, ⁴Montreal General Hospital, Montreal, QC, Canada, ⁵., Toronto, ON, Canada, ⁶Balfour Medical Clinic, Penticton, BC, Canada, ⁷McMaster University, Hamilton, ON, Canada, ⁸Université de Sherbrooke, Sherbrooke, QC, Canada, ⁹., Oakville, 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 trial and usually varies over time. The purpose…