Abstracts tagged "Pediatric rheumatology"

Abstract Number: 1173 • ACR Convergence 2020
No Disease Progression After 36 Months Follow up in the Juvenile Systemic Scleroderma Inception Cohort
Ivan Foeldvari¹, Jens Klotsche², Ozgur Kasapcopur³, Amra Adrovic⁴, Maria Teresa Terreri⁵, Edoardo Marrani⁶, Tadej Avcin⁷, Maria Katsicas⁸, Dana Nemcova⁹, Maria Jose Santos¹⁰, Jürgen Brunner¹¹, Tilmann Kallinich¹², Mikhail Kostik¹³, Kirsten Minden¹⁴, Anjali Patwardhan¹⁵, Kathryn Torok¹⁶ and Nicola Helmus¹⁷, ¹Head of the Hamburg Centre for Pediatric and Adolescence Rheumatology, Budapest, Hungary, ²German Rheumatism Research Center, Berlin, Germany, ³PRINTO, Istituto Giannina Gaslini, Genova, Italy, ⁴Cerrahpaşa Tıp Fakültesi, Istanbul, Turkey, ⁵Federal University of São Paulo, São Paulo, Brazil, ⁶University of Florence, Firenze, Italy, ⁷Ljubljana University Medical Centre, Ljubljana, Slovenia, ⁸Hospital de Pediatria, Buenos Aires, Argentina, ⁹General University Hospital, Prague, Czech Republic, ¹⁰Hospital Garcia de Orta, Almada, Portugal, ¹¹Tirol Kliniken, Innsbruck, Innsbruck, Austria, ¹²Charite, Berlin, Germany, ¹³Saint-Petersburg State Pediatric Medical University, Saint Petersburg, Russia, ¹⁴Deutsches Rheuma-Forschungszentrum Berlin, Berlin, Germany, ¹⁵University of Missouri, Columbia, ¹⁶University of Pittsburgh, Pittsburgh, PA, ¹⁷Hamburg Centre for Pediatric and Adolescence Rheumatology, Hamburg, Germany
Background/Purpose: Juvenile systemic scleroderma (jSSc) is an orphan disease with a prevalence of 3 in 1 000 000 children. Longitudinal prospective follow up data of…
Abstract Number: 1615 • ACR Convergence 2020
Assessing Preparation for Care Transition Among Adolescents with Rheumatologic Disease: A Quality Assessment with Patient Survey
Jordan Roberts¹, Olha Halyabar², Carter Petty³ and Mary Beth Son¹, ¹Boston Children's Hospital, Boston, MA, ²Children's Hospital/Boston Medical Center, Boston, MA, ³Boston Childrens Hospital, Institutional Centers for Clinical and Translational Research, Boston, MA
Background/Purpose: Despite the risk for poor outcomes and gaps in care in the transition from pediatric to adult care, most pediatric rheumatology centers lack formal…
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: 023 • 2020 Pediatric Rheumatology Symposium
Capturing the Range of Disease Involvement in Localized Scleroderma: The Total Morbidity Score
Suzanne Li¹, Aashka Patel ², Elena Pope ³, Thomas Mason ⁴, Vidya Sivaraman ⁵, Fatma Dedeoglu ⁶, Kathryn Torok ⁷, Katie Stewart ⁸, Gloria Higgins ⁹, C. Egla Rabinovich ¹⁰, Robert Fuhlbrigge ¹¹, Maria Ibarra ¹², Sandy Hong ¹³, Polly Ferguson ¹⁴, Mara Becker ¹⁵, Brian Feldman ¹⁶ and Ronald Laxer ¹⁷ for the CARRA investigators, ¹Joseph M. Sanzari Children's Hospital Hackensack Meridian Health, Hackensack, ²Hackensack University Medical Center, Hackensack, ³Hospital For Sick Kids, Toronto, Canada, ⁴Rochester, ⁵Division of Rheumatology, Nationwide Children's Hospital, Bexley, ⁶Boston Children's Hospital, Boston, ⁷Pediatric Rheumatology, Univ of Pittsburgh Med Ctr, Pittsburgh, ⁸UT Southwestern, Dallas, ⁹Nationwide Childrens Hospital/ The Ohio State University, Columbus, ¹⁰Duke University Hospital, Durham, ¹¹University of Colorado, Aurora, ¹²Children's Mercy Kansas City, Kansas City, ¹³University of Iowa Stead Family Children's Hospital, Iowa City, ¹⁴University of Iowa Carver College of Medicine, Iowa City, ¹⁵Duke University Medical Center/Duke Clinical Research Institute, Chapel Hill, ¹⁶The Hospital for Sick Children, Toronto, Canada, ¹⁷The Hospital for Sick Children and University of Toronto, Toronto, Canada
Background/Purpose: Localized scleroderma (LS) is a chronic inflammatory and fibrosing disease that causes both cutaneous and extracutaneous (EC) damage. EC involvement (ECI) is common in…
Abstract Number: 072 • 2020 Pediatric Rheumatology Symposium
Allogenic Hematopoietic Stem Cell Transplantation for Refractory Childhood Rheumatic Diseases
Camille Beaufils¹, Catherine Proulx ², Annaliesse Blincoe ³, Pierre Teira ⁴, Henrique Bittencourt ⁴, Sonia Cellot ⁵, Michel Duval ⁴, Johannes Roth ⁶, Marie-Paule Morin ⁷, Jean Jacques De Bruycker ⁷, Julie Couture ⁷, Kathryn Samaan ⁸, Helene Decaluwe ⁷, Fabien Touzot ⁷, Elie Haddad ⁷ and Julie Barsalou ⁷, ¹Division of Pediatric Rheumatology-Immunology, CHU Sainte-Justine, Montreal, Quebec, Canada, ²Department of Pediatrics, CHU Sainte-Justine, University of Montreal, Montreal, Quebec, Canada, ³Division of Pediatric Rheumatology-Immunology, CHU Sainte-Justine, Montreal, Canada, ⁴Division of Pediatric Hematology-Oncology, CHU Sainte-Justine, Department of Pediatrics, University of Montreal, Montreal, Quebec, Canada, ⁵Division of Pediatric Hematology-Oncology, CHU Sainte-Justine, Department of Pediatrics, University of Montreal, Montreal, Canada, ⁶Division of Pediatric Rheumatology, Children Hospital of Eastern Ontario, Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada, ⁷Division of Pediatric Rheumatology-Immunology, CHU Sainte-Justine, Department of Pediatrics, University of Montreal, Montreal, Quebec, Canada, ⁸Division of Pediatric Rheumatology-Immunology,-Allergy, CHU Sainte-Justine, Department of Pediatrics, University of Montreal, Montreal, Quebec, Canada
Background/Purpose: Patients with refractory rheumatic diseases face poor quality of life, long-term sequelae and life-threatening complications. With advances in allogenic hematopoietic stem cell transplantation (allo-HSCT),…
Abstract Number: 024 • 2020 Pediatric Rheumatology Symposium
Abatacept Treatment Reduces Cutaneous and Joint Activity in Juvenile Localized Scleroderma
Suzanne Li¹, Sarah Ishaq ², Mary Buckley ³, Kathryn Torok ⁴, Barbara Edelheit ⁵, Kaleo Ede ⁶ and C. Egla Rabinovich ⁷, ¹Joseph M. Sanzari Children's Hospital Hackensack Meridian Health, Hackensack, ²Montclair State University, montclair, ³Duke University, Durham, ⁴Pediatric Rheumatology, Univ of Pittsburgh Med Ctr, Pittsburgh, ⁵CT Children's Medical Center, Hartford, ⁶Phoenix Children's Hospital, Phoenix, ⁷Duke University Hospital, Durham
Background/Purpose: Juvenile localized scleroderma (jLS) is an autoimmune disease commonly associated with damage. Damage includes dyspigmentation, tissue atrophy, arthropathy, hemiatrophy, vision loss, and seizures. To…
Abstract Number: 078 • 2020 Pediatric Rheumatology Symposium
Reliability and Validity of a New Skin Activity Measure for Localized Scleroderma
Suzanne Li¹, Mara Becker ², Sandy Hong ³, Polly Ferguson ⁴, Themba Nyrienda ⁵, Tracy Andrews ⁶, Katie Stewart ⁷, C. Egla Rabinovich ⁸, Robert Fuhlbrigge ⁹, Thomas Mason ¹⁰, Elena Pope ¹¹, Maria Ibarra ¹², Fatma Dedeoglu ¹³, Gloria Higgins ¹⁴, Ronald Laxer ¹⁵, Marilynn Punaro ¹⁶ and Kathryn Torok ¹⁷ for the CARRA investigators, ¹Joseph M. Sanzari Children's Hospital Hackensack Meridian Health, Hackensack, ²Duke University Medical Center/Duke Clinical Research Institute, Chapel Hill, ³University of Iowa Stead Family Children's Hospital, Iowa City, ⁴University of Iowa Carver College of Medicine, Iowa City, ⁵Hackensack Univesity Medical Center, Hackensack, ⁶Rutgers University, Newark, ⁷UT Southwestern, Dallas, ⁸Duke University Hospital, Durham, ⁹University of Colorado, Aurora, ¹⁰Rochester, ¹¹Hospital For Sick Kids, Toronto, Canada, ¹²Children's Mercy Kansas City, Kansas City, ¹³Boston Children's Hospital, Boston, ¹⁴Nationwide Childrens Hospital/ The Ohio State University, Columbus, ¹⁵The Hospital for Sick Children and University of Toronto, Toronto, Canada, ¹⁶Dallas, Texas, ¹⁷Pediatric Rheumatology, Univ of Pittsburgh Med Ctr, Pittsburgh
Background/Purpose: Juvenile localized scleroderma (jLS) is a chronic inflammatory and fibrosing disease. Treatment is directed towards controlling disease activity to minimize risk for functional impairment…

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