Abstracts tagged "Pediatric rheumatology"

Abstract Number: 2167 • ACR Convergence 2024
Trust and Shared Decision-Making in Adolescents with Systemic Lupus Erythematosus: Findings from a Pilot Survey Design Study
Hayley M Lynch¹, Jon Burnham², Joyce Chang³, Mackenzie McGill², Nellie P Butler² and Sabrina Gmuca², ¹Seattle Children's Hospital, Seattle, WA, ²Children's Hospital of Philadelphia, Philadelphia, PA, ³Boston Children's Hospital, Brookline, MA
Background/Purpose: The lifelong nature of pediatric systemic lupus erythematosus (SLE) necessitates longitudinal doctor-patient relationships, and existing research in adult populations has demonstrated that aspects of…
Abstract Number: 2197 • ACR Convergence 2024
Outcome Measures for the Assessment of Cutaneous and Musculoskeletal Manifestations of Juvenile Systemic Sclerosis: An International Collaborative Scoping Review and Survey of Current Practice
Amanda Robinson¹, Mustafa Çakan², Simone Appenzeller³, Susan Shenoi⁴, Meiping Lu⁵, Betul Sozeri⁶, Rongjun Zheng⁵, Priya Bhave⁷, Natalia Vasquez Canizares⁸ and Suzanne Li⁹, and International Juvenile Systemic Sclerosis Outcomes Group (IJOG), ¹Division of Pediatric Rheumatology, University of Utah, Salt Lake City, UT, ²Clinic of Pediatric Rheumatology, Zeynep Kamil Women and Children's Diseases Training and Research Hospital, İstanbul, Turkey, ³Unicamp, Campinas, SP, Brazil, ⁴Seattle Children's Hospital and Research Center, Mercer Island, WA, WA, ⁵Department of Rheumatology Immunology and Allergy, Children's Hospital of Zhejiang University School of Medicine, National Clinical Research Center for Child Health, Hangzhou, China (People's Republic), ⁶University of Health Sciences, Istanbul, Turkey, ⁷Hackensack Meridian School of Medicine, Hackensack, NJ, ⁸Children's Hospital at Montefiore; Albert Einstein College of Medicine;, New York, NY, ⁹Hackensack Meridian School of Medicine, Joseph M. Sanzari Children's Hospital, Hackensack, NJ
Background/Purpose: Juvenile systemic sclerosis (jSSc) is a rare fibrosing autoimmune disease associated with significant morbidity and mortality. Data on treatment strategies is limited, primarily based…
Abstract Number: 2556 • ACR Convergence 2024
A Multi-center Study of Associations Between Neighborhood-Level Child Opportunity, Initial Disease Severity and Acute Care Utilization Among Children with SLE
Joyce Chang¹, Jessica Liu¹, Emily Smitherman², Pooja Patel³, Gabrielle Alonzi¹, Gabrielle Morgan⁴, Livie Timmerman⁵, Laura Berbert⁶, Edie Weller¹, Karen Costenbader⁷ and Mary Beth Son⁸, ¹Boston Children's Hospital, Boston, MA, ²University of Alabama at Birmingham, Birmingham, AL, ³Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, ⁴Ann & Robert H. Lurie Children's Hospital of Chicago and Northwestern University Feinberg School of Medicine, Chicago, IL, ⁵University of Alabama at Birmingham, Gardendale, AL, ⁶Boston Children's Hospital, Belmont, MA, ⁷Brigham and Women's Hospital/ Harvard Medical School, Boston, MA, ⁸Boston Children's Hospital, Brookline, MA
Background/Purpose: Child opportunity is defined as the neighborhood resources and conditions that promote healthy childhood development. We determined whether low neighborhood-level opportunity associates with more…
Abstract Number: PP05 • ACR Convergence 2024
Reunion with Forgotten Relationships and Memories
Noriko Okochi¹, Eiji Oishi², Kaoru Mitsuyama³, Emi Sorimachi³, Shiho Bando⁴, Yuka Hirama⁵, Nobuyuki Yajima⁶ and Masaaki Mori⁷, ¹Rheumatic Disease and Vasculitis Support Network Japan, Tokyo, Japan, ²Rheumatic Disease and Vasculitis Support Network Japan, Yamaguchi, Japan, ³Institute of Neuropsychiatry, Tokyo, Tokyo, Japan, ⁴Ota-ku Children and Families Support Center, Ota-ku, Tokyo, Japan, ⁵Asada Ladies Clinic, Shinagawa, Japan, Tokyo, Japan, ⁶Showa-Universtiy of Medicine, Tokyo, Japan, ⁷Tokyo Medical and Dental University, Tokyo, Japan
Background/Purpose: Paediatric rheumatic diseases are complex experiences for children. For children whose language skills are still undeveloped, it is difficult for them to put their…
Abstract Number: 0386 • ACR Convergence 2024
Variability of Data Completeness and Consensus Treatment Plan Adherence for Polyarticular Juvenile Idiopathic Arthritis Patients Within the Childhood Arthritis and Rheumatology Research Alliance Registry
Daniel Glaser¹, Cagri Yildirim-Toruner², Stacey Tarvin³, Stacy Ardoin⁴ and Timothy Beukelman⁵, and the CARRA Registry Investigators, ¹Yale University School of Medicine, New Haven, CT, ²Baylor College of Medicine/ Texas Children's Hospital, Houston, TX, ³Indiana University School of Medicine, Indianapolis, IN, ⁴Nationwide Children's Hospital, Columbus, OH, ⁵University of Alabama at Birmingham, Birmingham, AL
Background/Purpose: The Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry is a large observational registry of children and young adults with childhood-onset rheumatic disease. The Registry is…
Abstract Number: 0410 • ACR Convergence 2024
Efficacy of Modified Dosing/interval Timing of Adalimumab in Patients Affected by Chronic Non Infectious Uveitis: A Retrospective Monocentric Study
Melissa Lerman¹, Devlin Eckardt¹ and Sabino Germinario², ¹Children's Hospital of Philadelphia, Philadelphia, PA, ²Università degli studi di Milano, Milan, Italy
Background/Purpose: Non-infectious uveitis (NIU), inflammation of the eye, can occur in isolation, as in idiopathic uveitis (29% of all pediatric diagnosis), but may also be…
Abstract Number: 1256 • ACR Convergence 2024
Higher Disease Activity in Pediatric Systemic Lupus Erythematosus Is Associated with a Greater Desire for Social Health Education: An Unmet Need in Pediatric Rheumatology
Kaitlin Kirkpatrick, Melodee Liegl, Ke Yan and Sara Sabbagh, Medical College of Wisconsin, Milwaukee, WI
Background/Purpose: There is limited evidence on the educational needs and preferences of caregivers and adolescents and young adults (AYA) with rheumatic disease (RD) regarding the…
Abstract Number: 1274 • ACR Convergence 2024
Comparing Performance-Based Measures and Self-Reported Questionnaires for Assessment of Executive Function for Youth with Childhood-Onset Systemic Lupus Erythematosus
Tala El Tal¹, Jida Jaffan², Justine Ledochowski³, Louise Boulard⁴, Oscar Mwizerwa², Busisiwe Zapparoli⁵, Sarah Mossad⁶, Victoria Lishak⁷, Ibrahim Mohamed⁸, Joanna Law⁹, Lawrence Ng³, Paris Moaf⁹, Asha Jeyanathan², Adrienne Davis¹⁰, Linda Hiraki³, Deborah Levy³, Ashley Danguecan¹¹ and Andrea Knight¹², ¹The Hospital For Sick Children & Children's Hospital of Eastern Ontario (CHEO), Ottawa, ON, The Hospital for Sick Children, Division of Rheumatology, Department of Paediatrics, University of Toronto, Toronto, ON, Canada, ²The Hospital for Sick Children, Division of Rheumatology, Department of Paediatrics, University of Toronto, The Hospital for Sick Children, Neurosciences and Mental Health, Research Institute, Toronto, ON, Canada, ³The Hospital for Sick Children, Toronto, ON, Canada, ⁴Neurosciences and Mental Health Program, SickKids Research Institute; The Division of Rheumatology, The Hospital for Sick Children, Toronto, ON, Canada, ⁵The Hospital for Sick Children, Etobicoke, ON, Canada, ⁶Hospital for Sick Children, Toronto, ON, Canada, ⁷The Hospital for Sick Kids, Toronto, ON, Canada, ⁸The Hospital for Sick Children, Neurosciences and Mental Health, Research Institute, Toronto, ON, Canada, ⁹The Hospital for Sick Children, Division of Rheumatology, Department of Paediatrics, University of Toronto, Toronto, ON, Canada, ¹⁰Division of Pediatric Emergency Medicine, Department of Pediatrics, Hospital for Sick Children and University of Toronto, Toronto, ON, Canada, ¹¹The Hospital for Sick Children, Department of Psychology, University of Toronto, Toronto, ON, Canada, ¹²Division of Rheumatology, The Hospital for Sick Children; Neurosciences and Mental Health, SickKids Research Institute; Department of Paediatrics, University of Toronto, Toronto, ON, Canada
Background/Purpose: Executive dysfunction is common in childhood-onset systemic lupus erythematosus (cSLE). Comprehensive neuropsychological assessments use both performance-based measures and standardized questionnaires, capturing different cognitive constructs.…
Abstract Number: 1674 • ACR Convergence 2024
Variability in Pain and Depression Measures Between Adolescent Patients with Rheumatic Disease and Caregivers
Sarah Baluta¹, Homaira Rahimi², Michelle Swanger-Gagne³, Susan Yussman³ and Christina Schutt³, ¹University of Rochester Medical Center, Syracuse, NY, ²University of Rochester, Rochester, NY, ³University of Rochester Medical Center, Rochester, NY
Background/Purpose: The Patient Reported Outcome Measures Information System (PROMIS) has been validated for pediatric rheumatology conditions in several domains including, physical ability, mental health, and…
Abstract Number: 1782 • ACR Convergence 2024
DOCK2 Mutations and Hyper-Inflammatory Syndromes
Randy Cron, Mingce Zhang and Prescott Atkinson, University of Alabama at Birmingham, Birmingham, AL
Background/Purpose: Cytokine storm syndromes (CSS) are frequently fatal hyper-inflammatory complications of a variety of oncologic, rheumatic, and infectious diseases. Many patients with CSS possess heterozygous…
Abstract Number: 2173 • ACR Convergence 2024
Hope and Health in Adolescents with Chronic Musculoskeletal Pain
Irene Chern¹, Mackenzie McGill², Nellie P Butler² and Sabrina Gmuca², ¹St. Christopher's Hospital for Children, Philadelphia, PA, ²Children's Hospital of Philadelphia, Philadelphia, PA
Background/Purpose: Hope, the capability to derive pathways to desired goals and motivate oneself via agency thinking plays a protective role in pediatric health contributing to…
Abstract Number: 2198 • ACR Convergence 2024
Severe and Long-Term Outcomes of COVID-19 Infection and Vaccine Hesitancy and Adverse Events in Children with Pediatric Rheumatic Diseases: Insights from a COVID-19 Global Rheumatology Alliance Caregiver Survey
Jonathan Hausmann¹, Kevin Kennedy², Ethan Knapp³, Nadine Lalonde⁴, jOhn Wallace⁵, Richard Howard⁶, Marcela Alvarez⁷, Mariana Fabi⁸, Lorena Franco⁹, Rebecca Grainger¹⁰, Jean Liew¹¹, Pedro M Machado¹², Zachary Wallace¹³, Jinoos Yazdany¹⁴ and Emily Sirotich¹⁵, and COVID-19 Global Rheumatology Alliance, ¹Division of Immunology, Boston Children's Hospital, Harvard Medical School, Boston, MA, ²McMaster University, Hamilton, ON, Canada, ³University of Connecticut School of Medicine, Farmington, CT, ⁴COVID-19 Global Rheumatology Alliance, London, ON, Canada, ⁵Covid 19 Global Rheumatology Alliance Patient Board, EDINBURGH, United Kingdom, ⁶Spondylitis Association of America, Encino, CA, ⁷CHIDRENS HOSPITAL DR. RICARDO GUTIERREZ ARGENTINA, Buenos Aires, Argentina, ⁸Argentine Society of Rheumatology, La Plata, Argentina, ⁹Argentine Society of Rheumatology, Cordoba, Argentina, ¹⁰University of Otago, Wellington, New Zealand, ¹¹Boston University, Boston, MA, ¹²Department of Neuromuscular Diseases and Centre for Rheumatology, University College London, London, United Kingdom, ¹³Massachusetts General Hospital, Newton, MA, ¹⁴UCSF, San Francisco, CA, ¹⁵Yale University, Vaughan, ON, Canada
Background/Purpose: Children have the lowest COVID-19 vaccination rates of any age group. In adults with rheumatic diseases, barriers to vaccination include the perceived lack of…
Abstract Number: 2569 • ACR Convergence 2024
A Novel Hyperferritinemia Screen to Aid Differentiation of Hyperinflammatory Disorders
Hallie Carol¹, Adam Mayer², Jemy Varghese³, Zachary Martinez⁴, Caroline Diorio⁴, Paul Tsoukas⁵, Kate Kernan⁶ and Scott Canna⁷, ¹Children's Hospital of Philadelphia, Philadelphia, ²University of Pennsylvania/Children's Hospital of Philadelphia, Philadelphia, PA, ³Division of Pediatric Rheumatology, The Children’s Hospital of Philadelphia, Philadelphia, PA, ⁴Division of Pediatric Oncology, The Children’s Hospital of Philadelphia, Philadelphia, PA, ⁵Hospital for Sick Children/University of Toronto, Toronto, ON, Canada, ⁶Department of Critical Care Medicine, University of Pittsburgh School of Medicine, UPMC Children’s Hospital of Pittsburgh, Pittsburgh, PA, ⁷Children's Hospital of Philadelphia, Philadelphia, PA
Background/Purpose: High ferritin is an important and sensitive biomarker for the diverse and deadly group of cytokine storm syndromes grouped together under the term hemophagocytic…
Abstract Number: PP13 • ACR Convergence 2024
Bridging the Gap from Pediatric to Adult Rheumatology Care
Natasha Trehan, University of Ottawa, Take a Pain Check Foundation, Markham, ON, Canada
Background/Purpose: When I was 13, life took an unexpected turn with a diagnosis of Juvenile Idiopathic Arthritis (JIA). Overnight, my world transformed into a cycle…
Abstract Number: 0387 • ACR Convergence 2024
Absolute Agreement and Inter-rater Reliability of a Web-based Standardized Scoring Tool for Magnetic Resonance Images from Children with Chronic Nonbacterial Osteomyelitis (CNO) Amongst Radiologists
Farzana Nuruzzaman¹, T. Shawn Sato², Jennifer Stimec³, Ramesh S. Iyer⁴, Andrew Carbert⁵, Joel Paschke⁵, Lauren Potts⁶, Xiaoyue Zhang⁷, Walter Maksymowych⁸, Polly Ferguson⁹ and Yongdong (Dan) Zhao¹⁰, and CARRA CRMO Workgroup, ¹Stony Brook Children's Hospital, Stony Brook, NY, ²University of Iowa, Iowa City, ³Hospital for Sick Children, Toronto, ON, Canada, ⁴Seattle Children's Hospital, Seattle, WA, ⁵CARE Arthritis, Edmonton, AB, Canada, ⁶Artist, Long Beach, CA, ⁷Renaissance School of Medicine at Stony Brook University, Stony Brook, NY, ⁸University of Alberta, Edmonton, AB, Canada, ⁹University of Iowa Carver College of Medicine, Iowa City, IA, ¹⁰University of Washington, Redmond, WA
Background/Purpose: The web-based ChRonic nonbacterial Osteomyelitis Magnetic Resonance Imaging Scoring (CROMRIS) portal was developed to assess specific features of bone and soft tissue inflammation in…

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