Abstracts tagged "Pediatric rheumatology"

Abstract Number: 1681 • ACR Convergence 2020
Hemophagocytic Lymphohistiocytosis (HLH) Gene Variants in Childhood-onset SLE (cSLE) with Macrophage Activation Syndrome (MAS)
Piya Lahiry¹, Sergey Naumenko², Fangming Liao³, Daniela Dominguez⁴, Andrea Knight⁵, Deborah Levy⁶, Melissa Misztal⁷, Lawrence Ng⁸, Earl D. Silverman⁹ and Linda Hiraki¹⁰, ¹Hospital for Sick Children, Toronto, ON, Canada, ²The Centre for Computational Medicine, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada, ³Genetics & Genome Biology, Research Institute, The Hospital for Sick Children, Toronto, Canada, ⁴Division of Rheumatology, The Hospital for Sick Children, Toronto, Canada, ⁵Division of Rheumatology, The Hospital for Sick Children and Department of Paediatrics, University of Toronto, Toronto, ON, Canada, ⁶Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ⁷Genetics & Genome Biology, Research Institute, The Hospital for Sick Children, Oakville, ON, Canada, ⁸Division of Rheumatology, Hospital for Sick Children, Toronto, Canada, ⁹Division of Rheumatology, The Hospital for Sick Children, Translational Medicine, Research Institute, The Hospital for Sick Children, and Department of Paediatrics, University of Toronto., Toronto, ON, Canada, ¹⁰Division of Rheumatology, The Hospital for Sick Children, Child Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, and Department of Paediatrics, University of Toronto., Toronto, ON, Canada
Background/Purpose: Familial Hemophagocytic lymphohistiocytosis (fHLH) is an autosomal recessive, hyper-inflammatory, life-threatening disease. Macrophage activation syndrome (MAS) is also known as secondary HLH due to the…
Abstract Number: 1983 • ACR Convergence 2020
Trajectories of Disease Activity in Patients with Newly Diagnosed Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry
Natalie Shiff¹, Peter Shrader², Colleen Correll³, Anne Dennos⁴, Thomas Phillips² and Timothy Beukelman⁵, ¹Florida, Gainesville, FL, ²Duke University, Durham, ³University of Minnesota, Minneapolis, MN, ⁴Duke University, Durham, NC, ⁵University of Alabama at Birmingham, Birmingham, AL
Background/Purpose: To describe data-derived 2-year trajectories of disease activity in patients with recently diagnosed juvenile idiopathic arthritis (JIA) as measured by the clinical Juvenile Arthritis…
Abstract Number: 0164 • ACR Convergence 2020
What’s in a Name? Patient and Family Perspectives on the Naming of Systemic Juvenile Idiopathic Arthritis
Mariana Correia Marques¹, Rashmi Sinha², Karen Durrant³, Sivia Lapidus⁴, Nicole Tennermann⁵, Saskya Angevare⁶, Leah Bush⁷, Kari Cupp⁸, Jonathan Hausmann⁹, David Maher¹⁰, Shalla Newton¹⁰, Michael Ombrello¹¹, Phillip Reardon⁸, Rebecca Trachtman¹², Fatma Dedeoglu⁵ and Grant Schulert¹³, ¹Boston Children`s Hospital, Department of Pediatrics, Harvard Medical School, Boston, MA, ²SJIA Foundation, Cincinnati, ³Autoinflammatory Alliance, San Francisco, CA, ⁴The Joseph M. Sanzari Children's Hospital, Hackensack Meridian Health, Montclair, NJ, ⁵Boston Children's Hospital, Boston, MA, ⁶Autoinflammatory Alliance, Amersfoort, Netherlands, ⁷Systemic JIA Foundation, Cincinnati, OH, ⁸Systemic JIA Foundation, Cincinnati, ⁹Boston Children's Hospital / Beth Israel Deaconess Medical Center, Cambridge, MA, ¹⁰Still's Disease, the 411, National organization, ¹¹Translational Genetics and Genomics Unit, NIAMS, NIH, Bethesda, MD, ¹²Icahn School of Medicine at Mount Sinai, New York, NY, ¹³PRCSG, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH
Background/Purpose: The childhood inflammatory disorder systemic juvenile idiopathic arthritis (SJIA) has historically had several names, including Still’s disease and systemic juvenile rheumatoid arthritis. While its…
Abstract Number: 0719 • ACR Convergence 2020
Anti-adalimumab Antibodies Detection Using a Novel Peptide-based Assay in a Cohort of Pediatric Patients with Chronic Rheumatic Disorders: A Pilot Study
Edoardo Marrani¹, Hendrik Rusche², Francesco Terzani³, Elisa Peroni⁴, Feliciana Real-Fernandez⁵, Olivier Monasson⁴, Roberta Ponti⁶, Gabriele Simonini⁷, Anna Maria Papini³ and Paolo Rovero⁵, ¹University of Florence, Firenze, Italy, ²Peptlab@CY and Laboratory of Chemical Biology, Cergy-Paris University, Cergy-Pontoise,, France, ³PeptLab, Dep. Chemistry, University of Florence, Sesto FIorentino, Italy, ⁴Peptlab@CY and Laboratory of Chemical Biology, Cergy-Paris University, cergy-pontoise, France, ⁵PeptLab, Dep. NEUROFARBA, University of Florence, Firenze, Italy, ⁶Pediatric Department, University of Udine, udine, Italy, ⁷Rheumatology Unit, Meyer Children's University Hospital, Florence; NEUROFARBA Department, University of Florence, Italy, Florence, Italy
Background/Purpose: Immunogenicity and development of anti-drug antibodies have been associated with treatment failure and adverse events during biologic treatment. Anti-drug antibodies (ADAs) have been reported…
Abstract Number: 1138 • ACR Convergence 2020
Estimation of Clinically Important Differences in Patient-Reported Outcomes Measurement Information System (PROMIS) Measures in Juvenile Myositis
Madison Wolfe¹, Amanda Robinson², Jin-Shei Lai³, Theresa Coles⁴, Elizabeth Gray³, Rowland Chang³, David Cella³ and Kaveh Ardalan⁵, ¹Creighton University School of Medicine, Omaha, NE, ²Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, ³Northwestern University Feinberg School of Medicine, Chicago, IL, ⁴Duke University, Durham, ⁵Duke University Medical Center, Durham, NC
Background/Purpose: Juvenile myositis (JM) causes weakness, rashes, pain, and fatigue, thereby impacting health-related quality of life (HRQoL). Patient-Reported Outcomes Measurement Information System (PROMIS®) measures have…
Abstract Number: 1174 • ACR Convergence 2020
HEADSS and Shoulders, Knees and Toes: Improving Sexual Orientation and Gender Identity Screening in the Pediatric Rheumatology Clinic
Nayimisha Balmuri¹, Jacob Spitznagle¹, Alexa Adams¹, Karen Onel², Sarah Taber¹ and Nancy Pan¹, ¹Hospital for Special Surgery, new york, NY, ²Pediatric Rheumatology, Hospital for Special Surgery, New York, NY
Background/Purpose: Adolescence is an especially vulnerable time when many rheumatologic conditions first present for diagnosis and management. Adolescence brings unique challenges including those relating to…
Abstract Number: 1616 • ACR Convergence 2020
Systematic Review of Effectiveness Outcomes Reported in Rheumatology Transition Literature
Heather Bannerman¹, Karen Beattie¹, Avanti Patel², Milica Tanic², Michelle Batthish³ and Mark Matsos², ¹McMaster University, Hamilton, ON, Canada, ²McMaster University, Hamilton, Canada, ³McMaster Children's Hospital, Hamilton, ON, Canada
Background/Purpose: In young patients with rheumatologic disease, transition from pediatric to adult care is a complex process. Poor transitional care leads to health deterioration, loss…
Abstract Number: 1683 • ACR Convergence 2020
Ready or Not? Measuring Readiness for Transition to Adult Care in Adolescents with JIA & jSLE
Jeanine McColl¹, Teresa Semalulu¹, Arzoo Alam², Steffy Thomas², Julie Herrington³, Jan Willem Gorter², Tania Cellucci², Stephanie Garner², Liane Heale², Mark Matsos², Karen Beattie¹ and Michelle Batthish⁴, ¹McMaster University, Hamilton, ON, Canada, ²McMaster University, Hamilton, Canada, ³The Canadian Arthritis Society, Hamilton, Canada, ⁴McMaster Children's Hospital, Hamilton, ON, Canada
Background/Purpose: Transitioning from pediatric to adult care represents a particularly vulnerable period among patients with JIA and jSLE. The shift to adult care is often…
Abstract Number: 1985 • ACR Convergence 2020
Validity and Reliability of Four Parent/Patient Reported Outcome Measures for Juvenile Idiopathic Arthritis
Chiara Trincianti¹, E. H. Pieter Van Dijkhuizen², Serena Calandra³, Helga Sanner⁴, Tamas Constantin⁵, Troels Herlin⁶, Marco Cattalini⁷, Flavio Sztajnbok⁸, Despoina Maritsi⁹, Nicolino Ruperto¹⁰, Angelo Ravelli¹¹ and Alessandro Consolaro¹¹, ¹Istituto Giannina Gaslini, Genova, Liguria, Italy, ²Wilhelmina Children’s Hospital, Utrecht, Netherlands, ³IRCCS Istituto Giannina Gaslini, Genoa, Liguria, Italy, ⁴Oslo University Hospital, Oslo, Norway, ⁵Semmelweis University, Budapest, Hungary, ⁶Aarhus University Hospital, Aarhus, Denmark, ⁷Università di Brescia, Brescia, Italy, ⁸Universidade do Estado do Rio de Janeiro, Rio de Janeiro, Brazil, ⁹National and Kapodistrian University of Athens, Athens, Greece, ¹⁰Istituto Giannina Gaslini, Genova, Italy, ¹¹Università degli Studi di Genova, Genoa, Italy
Background/Purpose: In the last years, the interest in the assessment of parent- and child-reported outcomes (PCROs) in paediatric rheumatic diseases is gaining increasing importance. These…
Abstract Number: 0171 • ACR Convergence 2020
Interferon Response Gene Expression Differs in Whole Blood, Peripheral Blood Mononuclear Cells, Monocytes, T Cells, B Cells, and NK Cells in Patients with the Autoinflammatory Interferonopathies, CANDLE and SAVI
Jacob Mitchell¹, Sara Alehashemi², Bernadette Marrero³, Yan Huang⁴, Sofia Torreggiani¹, Lena Bichell¹, Gina Montealegre Sanchez⁵, Raphaela Goldbach-Mansky⁶ and Adriana de Jesus⁷, ¹Translational Autoinflammatory Disease Section (TADS)/NIAID/NIH, Bethesda, MD, ²Translational Autoinflammatory Disease Section (TADS)/NIAID/NIH, Clarksville, MD, ³Computational Systems Biology Section/NIAID/NIH, Bethesda, MD, ⁴NIH, Bethesda, ⁵NIAID/NIH, Rockville, MD, ⁶Translational Autoinflammatory Disease Section (TADS)/NIAID/NIH, Potomac, MD, ⁷Translational Autoinflammatory Disease Section (TADS)/NIAID/NIH, Silver Spring, MD
Background/Purpose: The disease progression of patients (pts.) with type-I interferon (IFN)-mediated diseases undergoing treatment with JAK1 and JAK2 inhibitors is monitored in part by measuring…
Abstract Number: 0721 • ACR Convergence 2020
Validation of New Antirheumatic Drug Use as a Proxy for Increased JIA Disease Activity
Avinash Gabbeta¹, Evan Mulvihill², Timothy Beukelman³, James Lewis⁴, Carlos Rose⁵, Brian Strom⁶ and Daniel Horton⁷, ¹St. Christopher's Hospital for Children, Philadelphia, PA, ²Nemours A.I. duPont Hospital for Children, Wilmington, DE, ³University of Alabama at Birmingham, Birmingham, AL, ⁴University of Pennsylvania, Philadelphia, PA, ⁵Nemours A.I. duPont Hospital for Children, Wilmingon, DE, ⁶Rutgers University, Newark, NJ, ⁷Rutgers University, New Brunswick, NJ
Background/Purpose: Administrative claims databases are valuable tools for studying treatment effects in large JIA populations but do not contain direct measures of disease activity, limiting…
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: 1175 • ACR Convergence 2020
Using a Patient-Engaged Approach to Identify Cross-Cutting Disease Factors Impacting Mental Health in Youth with Rheumatologic Disease
Ashley Danguecan¹, Oluwatunmise Fawole², Michelle Reed³, Julia Harris⁴, Aimee Hersh⁵, Martha Rodriguez⁶, Karen Onel⁷, Erica Lawson⁸, Tamar Rubinstein⁹, Kaveh Ardalan¹⁰, Esi Morgan¹¹, Anne Paul¹², Judy Barlin¹³, R. Paola Daly¹⁴, Mitali Dave¹⁵, Shannon Malloy¹⁶, Shari Hume¹⁵, Suzanne Schrandt¹⁷, Laura Marrow¹⁸, Angela Chapson³, Donna Napoli³, Michael Napoli³, Miranda Moyer³, Vincent Delgaizo¹⁹, Emily von Scheven⁸ and Andrea Knight²⁰, ¹Hospital for Sick Children, Toronto, Canada, ²New York University School of Medicine, New York, ³Children's Hospital of Philadelphia, Philadelphia, ⁴Children's Mercy Kansas City, Overland Park, KS, ⁵University of Utah and Primary Children's Hospital, Salt Lake City, ⁶Riley Hospital for Children at Indiana University Health, Indianapolis, ⁷Pediatric Rheumatology, Hospital for Special Surgery, New York, NY, ⁸University of California San Francisco, San Francisco, ⁹Albert Einstein College of Medicine / Montefiore Medical Center, White Plains, NY, ¹⁰Duke University Medical Center, Durham, NC, ¹¹Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, ¹²Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, ¹³Lupus Foundation of America, Miami, ¹⁴Lupus Foundation of America, Washington, ¹⁵Cure JM Foundation, Leesburg, ¹⁶Cure JM Foundation, Seattle, ¹⁷Arthritis Foundation, Arlington, ¹⁸Arthritis Foundation, Atlanta, ¹⁹Childhood Arthritis and Rheumatology Research Alliance, Whitehouse Station, ²⁰Division of Rheumatology, The Hospital for Sick Children and Department of Paediatrics, University of Toronto, Toronto, ON, Canada
Background/Purpose: Mental health problems are common and often untreated in youth with rheumatologic disease, yet their relationship with disease features is poorly understood. We engaged…
Abstract Number: 1617 • ACR Convergence 2020
New Juvenile Idiopathic Arthritis Quality Measure Set for the Pediatric Rheumatology Care and Outcomes Improvement Network
Julia Harris¹, Esi Morgan², Sheetal Vora³, Mileka Gilbert⁴, Cagri Yildirim-Toruner⁵, Nancy Griffin⁶, Kerry Ferraro⁷, Stephanie Loos⁶, Tingting Qiu⁸, Anne Paul⁹, Jon Burnham¹⁰, Michelle Batthish¹¹, Beth Gottlieb¹², Danielle Bullock¹³, Melissa Hazen¹⁴, Ronald Laxer¹⁵, Tzielan Lee¹⁶, Melissa Mannion¹⁷, Judyann Olson¹⁸, Nancy Pan¹⁹, Michael Shishov²⁰, Charles Spencer²¹, Jennifer E Weiss²² and C. April Bingham²³, ¹Children's Mercy Kansas City, Overland Park, KS, ²Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, ³Atrium Health Levine Children's Hospital, Charlotte, NC, ⁴Medical University of South Carolina, Charleston, SC, ⁵Nationwide Children's Hospital, Houston, TX, ⁶Cincinnati Children's Hospital Medical Center, Cincinnati, ⁷Pediatric Rheumatology Care and Outcomes Improvement Network, Cincinnati, ⁸Cincinnati Children's Hospital Medical Center, Cincinnati, OH, ⁹Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Cincinnati, ¹⁰Children's Hospital of Philadelphia, Philadelphia, PA, ¹¹McMaster Children's Hospital, Hamilton, ON, Canada, ¹²Cohen Children's Medical Center, Lake Success, NY, ¹³University of Minnesota, Minneapolis, MN, ¹⁴Boston Children's Hospital, Boston, MA, ¹⁵The Hospital for Sick Children, Toronto, ON, Canada, ¹⁶Stanford University School of Medicine, Palo Alto, CA, ¹⁷University of Alabama at Birmingham, Birmingham, AL, ¹⁸Medical College of Wisconsin, Milwaukee, WI, ¹⁹Hospital for Special Surgery, New York, NY, ²⁰Phoenix Children's Hospital, Phoenix, AZ, ²¹University of Mississippi, Jackson, MS, ²²PRCSG, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, ²³Penn State Children's Hospital, Allentown, PA
Background/Purpose: The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) is a learning network to support pediatric rheumatology centers in improving care delivery and patient…
Abstract Number: 1684 • ACR Convergence 2020
Increase in Emergency Department Visits and Hospitalizations, Decrease in Outpatient Visits Following Transition to Adult Rheumatologic Care
Paul Jensen¹, Jessica Greco², Kenneth Jackson³ and Stacy Ardoin⁴, ¹Intermountain Healthcare, St. George, UT, ²Ohio State University/Nationwide Children's Hospital, Columbus, OH, ³Ohio State University Medical Center, Columbus, OH, ⁴Nationwide Children's Hospital, Columbus, OH
Background/Purpose: Many children with rheumatic disease have active disease as adults, and health care gaps often occur in the transition from pediatric to adult care.…

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