Abstracts tagged "Patient reported outcomes"

Abstract Number: 1042 • ACR Convergence 2024
Identifying Patient Priorities for Patient-Reported Outcome Measures in Rheumatoid Arthritis: A Modified Delphi Consensus Study
Racheal Githumbi¹, Steven Katz², Ania Kania-Richmond¹, Kim Giroux³, Yvonne Wallace³, Cheryl Barnabe¹, Glen Hazlewood¹, C. Allyson Jones², Amanda Steiman⁴, Anshula Ambasta¹, Diane Lacaille⁵, Elaine Yacyshyn², Jessica Widdifield⁶, Natasha Gakhal⁷, Tyler Williamson¹ and Claire Barber¹, ¹University of Calgary, Calgary, AB, Canada, ²University of Alberta, Edmonton, AB, Canada, ³Patient Partner, Calgary, AB, Canada, ⁴Sinai Health System, Toronto, ON, Canada, ⁵Arthritis Research Canada, University of British Columbia, Vancouver, BC, Canada, ⁶Sunnybrook Research Institute / ICES / UofT Institute of Health Policy, Management & Evaluation, Toronto, ON, Canada, ⁷Women's College Hospital, Toronto, ON, Canada
Background/Purpose: Patient-reported outcome measures (PROMs) are essential tools for prioritizing patient-centric care and enhancing health system-performance measurement in rheumatology. Effective use of PROMs collected in…
Abstract Number: 1255 • ACR Convergence 2024
Development and Validation of a Brief Measure of Uncertainty Among Patients with Vasculitis and Other Rheumatic Diseases
Caleb Bolden¹, Claire Cook¹, Lucy Finkelstein-Fox¹, Xiaoqing Fu¹, Flavia Castelino¹, Hyon K. Choi², Cory Perugino¹, John Stone³, Elyse Park¹, Christine Yeung⁴, Corrie Stone-Johnson⁵, Stacey Ivits⁶, Peter Merkel⁷, Daniel Hall¹ and Zachary Wallace⁸, ¹Massachusetts General Hospital, Boston, MA, ²Massachusetts General Hospital, Lexington, MA, ³Massachusetts General Hospital , Harvard Medical School, Concord, MA, ⁴University of Pennsylvania, Philadelphia, ⁵University at Buffalo, Buffalo, NY, ⁶Stacey Ivits MSW RSW Counselling Services, Ontario, ⁷Division of Rheumatology, Department of Medicine, University of Pennsylvania, Philadelphia, PA, ⁸Massachusetts General Hospital, Newton, MA
Background/Purpose: Patients with rheumatic diseases face illness-related uncertainty managing ambiguous and unpredictable symptoms. Such uncertainty is associated with decreased emotional and physical well-being (Wallace et…
Abstract Number: 1402 • ACR Convergence 2024
Addressing Unmet Needs in Cannabis and Hemp by Improving Knowledge and Data Collection
Jahan Marcu¹, Philip Molloy², Kayla Pray³ and Teresa Simon⁴, ¹Marcu Enterprises/ Physicians Research Center, Jersey City, NJ, ²Physicians Research Center,LLC, Carver, MA, ³Physicians Research Center,LLC, Farmingdale, NJ, ⁴Physicians Research Center,LLC, Toms River, NJ
Background/Purpose: Cannabis and its derivatives are increasingly integrated into treatments for rheumatic diseases, yet there is a significant lack of evidence and systematic data collection…
Abstract Number: 1974 • ACR Convergence 2024
The Impact of Concomitant Shoulder Osteoarthritis in Polymyalgia Rheumatica
Patricia Harkins¹, Sharon Cowley², Robert Harrington³, David Kane⁴ and Richard Conway⁵, ¹Trinity College Dublin, Dublin 8, Dublin, Ireland, ²Tallaght University Hospital, Dublin, Dublin, Dublin, Ireland, ³St. James's Hospital, Dublin, Dublin, Ireland, ⁴Tallaght University Hospital & Trinity College Dublin, D24, Ireland, ⁵Trinity College Dublin, Dublin, Ireland
Background/Purpose: Polymyalgia rheumatica (PMR) is an inflammatory rheumatic disease of the shoulder and pelvic girdle. In the majority of centres, baseline shoulder radiograph forms part…
Abstract Number: 2172 • ACR Convergence 2024
A Novel Cohort to Assess Longitudinal Glucocorticoid Toxicity in Individuals with Rheumatic Diseases: Objectives, Design, and Initial Baseline Characteristics
Naomi Patel¹, Miao Lin¹, Bohang Jiang¹, Isha Jha¹, Grace McMahon¹, Aubree E. McMahon¹, Yuqing Zhang², Hyon K. Choi³, Zachary Wallace⁴ and John Stone⁵, ¹Massachusetts General Hospital, Boston, MA, ²Division of Rheumatology, Allergy, and Immunology, Department of Medicine, Massachusetts General Hospital, Harvard Medical School; The Mongan Institute, Massachusetts General Hospital, Harvard Medical School, Boston, MA, ³Massachusetts General Hospital, Lexington, MA, ⁴Massachusetts General Hospital, Newton, MA, ⁵Massachusetts General Hospital , Harvard Medical School, Concord, MA
Background/Purpose: Glucocorticoids (GC) are a backbone of treatment regimens for many rheumatic diseases despite their association with toxicities that contribute to excess morbidity and mortality.…
Abstract Number: 2460 • ACR Convergence 2024
Severe Gastrointestinal Involvement in Systemic Sclerosis: A New “Transversal” Subset of Disease to Be Prioritised for Intervention Trials
Marco Minerba¹, Riccardo Bixio², Seda Colak³, Stefano Di Donato⁴, Lesley-Anne Bissell⁵ and Francesco Del Galdo⁶, ¹1. Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, 2. NIHR Leeds Biomedical Research Centre, United Kingdom, Leeds, United Kingdom, ²University of Verona, Verona, Verona, Italy, ³Gulhane Training and Research Hospital, Ankara, Turkey, ⁴Leeds Institute of Rheumatic and Musculoskeletal Medicine, Chapel Allerton Hospital, Leeds, UK, Leeds, United Kingdom, ⁵Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom, ⁶University of Leeds, Leeds, United Kingdom
Background/Purpose: Gastrointestinal (GI) involvement is the most frequent internal complication of systemic sclerosis (SSc) and, when severe, it has a major influence on patient function.…
Abstract Number: 0368 • ACR Convergence 2024
Development and Validation of a Patient-centered Self-evaluation Questionnaire in Systemic Lupus Erythematosus: LUPIN®
Marc Scherlinger¹, Jean-Francois Kleinmann¹, Antonin Folliasson², Marianne Riviere³, Raphaelle Rybak⁴, Sabine Malivoir⁵, Jean-François Viallard⁶, Estibaliz Lazaro⁷, Christophe Richez⁸, Irene Machelart⁹, Nadine Magy-Bertrand¹⁰, Audrey Gorse¹¹, Gilles Blaison¹², Julien Campagne¹³, Benjamin Dervieux¹⁴, Thomas Moulinet¹⁵, Roland Jaussaud¹⁶, Pascal Roblot¹⁷, Mathieu Puyade¹⁷, Amélie Servettaz¹⁸, Pauline Orquevaux¹⁸, Julie le Scanff¹⁹, DANIEL WENDLING²⁰, Marc Andre²¹, Ludovic Trefond²¹, Perrine SMETS²², Nicolas Baillet²³, Christophe Deligny²⁴, Xavier Mariette²⁵, ARNAUD HOT²⁶, Emmanuelle David²⁷, Laurent Perard²⁸, Estelle Jean²⁹, Sarah Permal³⁰, Denis WAHL³¹, Christian Agard³², François Chasset³³, Baptiste Hervier³⁴, Pasquer Ronan², Mickael Martin¹⁷, Ludivine Lebourg³⁵, Frederic Renou³⁶, Loic Raffray³⁶, Elisabeth Diot³⁷, Cecile Fermont³⁸, Thierry Martin³⁹, Anne-Sophie Korganow³⁹, Jacques-Eric Gottenberg⁴⁰, Jean Sibilia⁴¹ and Zahir Amoura⁴², ¹Strasbourg University Hospital - National reference center for autoimmune disease, Rheumatology, Strasbourg, France, ²Hometrix Health, Paris, France, ³Association Francaise du Lupus et autres maladies autoimmunes (AFL+), Metz, France, ⁴Association Francaise du Lupus et autres maladies autoimmunes (AFL+), Paris, France, ⁵APHP Pitié Salpêtrière - National reference center for autoimmune disease, Internal Medicine, Paris, France, ⁶CHU de Bordeaux, Hôpital Haut-Lévêque, Pessac, FR, Bordeaux, France, ⁷Bordeaux University Hospital, Pessac, France, ⁸Université de Bordeaux, Bordeaux, France, ⁹CH de Bayonne - Competence center for autoimmune diseases, Internal Medicine, Bayonne, France, ¹⁰CHU de Besancon - Competence center for autoimmune diseases, Internal Medicine, Besançon, France, ¹¹CH de Chambery - Competence center for autoimmune diseases, Internal Medicine, Chambery, France, ¹²CH de Colmar - Competence center for autoimmune diseases, Internal Medicine, Colmar, France, ¹³Hôpital Robert Schuman - Competence center for autoimmune diseases, Internal Medicine, Metz, France, ¹⁴CH de Mulhouse - Competence center for autoimmune diseases, Internal Medicine, Mulhouse, France, ¹⁵CHRU de Nancy, Vandœuvre-lès-Nancy, France, ¹⁶CHU de Nancy - Competence center for autoimmune diseases, Internal Medicine, Nancy, France, ¹⁷CHU de Poitiers - Competence center for autoimmune diseases, Internal Medicine, Poitiers, France, ¹⁸CHU de Reims - Competence center for autoimmune diseases, Internal Medicine, Reims, France, ¹⁹CH - Competence center for autoimmune diseases, Internal Medicine, Villefranche-sur-Saone, France, ²⁰University Hospital, Besançon, France, ²¹CHU de Clermont-Ferrand - National reference center for autoimmune disease, Internal Medicine, Clermont-Ferrand, France, ²²Clermont Ferrand University Hospital - National reference center for autoimmune disease, Internal Medicine, Clermont-Ferrand, France, ²³CH de Basse-Terre - Competence center for autoimmune diseases, Internal Medicine, Basse-Terre, France, ²⁴University Hospital of Martinique - National reference center for autoimmune disease, Internal Medicine, Fort-de-France, Martinique, ²⁵Service de Rhumatologie, Hôpital Bicêtre, AP-HP, Le Kremlin Bicetre, France, ²⁶Service de Médecine interne, Hôpital Edouard Herriot, Hospices Civils de Lyon, Lyon, France, ²⁷HCL - Croix Rousse, Internal Medicine, Lyon, France, ²⁸Hopital Saint-Joseph, Internal Medicine, Lyon, France, ²⁹APHM - La Timone, Internal Medicine, Marseille, France, ³⁰CH Mayotte - CH Wallis-et-Futuna, Internal Medicine, Mamoudzou, Mayotte, ³¹Lorraine University, Nancy, France, ³²CHU de Nantes - National reference center for autoimmune disease, Internal Medicine, Nantes, France, ³³Dermatology, Hôpital Tenon, Paris, France, ³⁴APHP Saint-Louis - National reference center for autoimmune disease, Internal Medicine, Paris, France, ³⁵CHU de Rouen, Internal Medicine, Rouen, France, ³⁶CHU La Réunion - Competence center for autoimmune diseases, Internal Medicine, Saint-Denis, Reunion, ³⁷CHU de Tours - Competence center for autoimmune diseases, Internal Medicine, Tours, France, ³⁸CH de Valence - Competence center for autoimmune diseases, Internal Medicine, Valence, France, ³⁹Strasbourg University Hospital, National reference center for autoimmune disease, Clinical Immunology, Strasbourg, France, ⁴⁰Rheumatology Department, Strasbourg University Hospital,, Strasbourg, France, ⁴¹Strasbourg University Hospital, National reference center for autoimmune disease, Rheumatology, Strasbourg, France, ⁴²French National Reference Centre for Systemic Lupus Erythematosus, Pitié-Salpêtrière Hospital, Paris, France
Background/Purpose: Systemic Lupus Erythematosus (SLE) features unpredictable disease activity fluctuations, making flare hard to detect and significantly impairing quality of life. This highlights the need…
Abstract Number: 0620 • ACR Convergence 2024
Clinical Efficacy and Patient-Reported Outcomes in Anti-Ro/Sjögren’s Syndrome–Related Antigen a Antibody–Positive Patients with Active SLE Treated WithDeucravacitinib in the Phase 2 PAISLEY Trial
Benjamin A. Fisher¹, Hendrika Bootsma², Vibeke Strand³, Wan-Fai Ng⁴, Thomas Wegman⁵, Brandon Becker⁶, Jiyoon Choi⁶, Antoine Sreih⁶, Leo Chen⁷, Antonia Christodoulou⁶ and Eric Morand⁸, ¹University of Birmingham, Birmingham, United Kingdom, ²Department of Rheumatology and Clinical Immunology, University of Groningen, University Medical Center Groningen, Groningen, Groningen, Netherlands, ³Division of Immunology/Rheumatology, Stanford University, Palo Alto, CA, ⁴Institute of Cellular Medicine, Newcastle University, Gateshead, United Kingdom, ⁵Bristol Myers Squibb, Beaver Falls, PA, ⁶Bristol Myers Squibb, Princeton, NJ, ⁷Bristol Myers Squibb, Richmond, BC, Canada, ⁸School of Clinical Sciences, Monash University, Melbourne, Victoria, Australia
Background/Purpose: Deucravacitinib is a first-in-class, oral, selective, allosteric tyrosine kinase 2 (TYK2) inhibitor approved in multiple countries for the treatment of adults with moderate to…
Abstract Number: 1059 • ACR Convergence 2024
The Negative Impact of Physicians’ Neuroticism and Conscientiousness on Shared Decision Making in Patients with Systemic Lupus Erythematosus: The TRUMP2-SLE Project
Shigemi Morishita¹, Kenei Sada², Masataka Kudo³, Naofumi Dobashi⁴, Ryusuke Yoshimi⁵, Natsuki Sakurai⁶, Chiharu Hidekawa⁶, Yasuhiro Shimojima⁷, Dai Kishida⁷, Takanori Ichikawa⁷, Yoshi Miyawaki⁸, Keigo Hayashi⁹, Kenta Shidahara¹⁰, Yuichi Ishikawa¹¹, Nao Oguro¹², Nobuyuki Yajima¹³ and Noriaki Kurita¹⁴, ¹Department of Surgery, Oida Hospital, Sukumo, Japan, ²Department of Clinical Epidemiology, Kochi Medical School, Kochi University, Nankoku, Kochi, Japan, ³Department of General Internal Medicine, Iizuka Hospital, Fukuoka, Japan, ⁴Department of Internal Medicine, Kochi Prefectural Hata-Kenmin Hospital, Sukumo, Japan, ⁵Department of Medicine (Neurology and Rheumatology), Shinshu University School of Medicine, Yokohama, Kanagawa, Japan, ⁶Department of Stem Cell and Immune Regulation,Yokohama City University Graduate School of Medicine, Yokohama, Kanagawa, Japan, ⁷Department of Medicine (Neurology and Rheumatology), Shinshu University School of Medicine, Matsumoto, Nagano, Japan, ⁸Department of Nephrology, Rheumatology, Endocrinology and Metabolism, Okayama University Graduate School of Medicine, Dentistry and Pharmaceutical Sciences, Okayama, Japan, ⁹Brigham and Women’s Hospital, Brookline, MA, ¹⁰"Department of Nephrology, Rheumatology, Endocrinology and Metabolism, Okayama University Graduate School of Medicine, Dentistry and Pharmaceutical Sciences, Okayama, Okayama, Japan, ¹¹The First Department of Internal Medicine, University of Occupational and Environmental Health, Kitakyushu, Fukuoka, Japan, ¹²Division of Rheumatology, Department of Medicine, Showa University School of Medicine, Tokyo, Japan, ¹³Division of Rheumatology, Department of Medicine, Showa University School of Medicine, Tokyo, Japan., Tokyo, Japan, ¹⁴Department of Clinical Epidemiology, Graduate School of Medicine, Fukushima Medical University, Fukushima, Japan
Background/Purpose: The treatment of systemic lupus erythematosus (SLE) remains challenging due to its complexity, despite the introduction of various promising treatments. Recent EULAR recommendations emphasize…
Abstract Number: 1259 • ACR Convergence 2024
Adverse Childhood Experiences Are Associated with Patient-Reported Outcomes in Adolescents and Young Adults with Systemic Lupus
Tamar Rubinstein¹, Avni Dave², Terrence Calistro³, Kimberly Rapoza³, Shari Salzhauer Berkowitz³, Joyce Hui-Yuen⁴, Zanab Mian⁵, Emily Masi⁶ and Kathleen Kenney-Riley⁷, ¹Albert Einstein College of Medicine, White Plains, NY, ²Albert Einstein College of Medicine, Bronx, NY, ³Mercy University, Dobbs Ferry, NY, ⁴Northwell Health, Cohen Children's Medical Center, Great Neck, NY, ⁵Cohen Children's Medical Center, Lake Success, NY, ⁶Cohen Children's Medical Center, Floral Park, NY, ⁷Albert Einstein College of Medicine, Port Chester, NY
Background/Purpose: Adverse childhood experiences (ACEs), are major life stressors that occur before the age of 18 and include experiences of household dysfunction. Recently, prior trauma,…
Abstract Number: 1411 • ACR Convergence 2024
Impact of Patient and Physician Alignment on Sjögren’s Disease Severity, a Real-World Survey on Patients’ Clinical Outcomes and Health-Related Quality of Life
Wan Fai Ng¹, Coralie Bouillot², NICOLA MASSEY³, Megan Hughes³, Victoria Barton³, Giorgio Castellano³, Ana Barat⁴, Gayle Kenney⁵ and Jessica Marvel⁶, ¹Department of Rheumatology, Newcastle University, & HRB Clinical Research Facility, University College Cork, Newcastle upon Tyne, United Kingdom, ²Sjögren Europe, Switzerland, Switzerland, ³ADELPHI REAL WORLD, BOLLINGTON, United Kingdom, ⁴Novartis Ireland Ltd, Dublin, Ireland, ⁵Novartis Pharma AG, Basel, Switzerland, ⁶Novartis, East Hanover, NJ
Background/Purpose: Sjögren’s disease (SjD) has a high disease burden in affected patients, with no licensed treatments currently available. The Clinical EULAR Sjögren’s syndrome disease activity…
Abstract Number: 2002 • ACR Convergence 2024
Pain and Physical Function, but Not Fatigue, Track with Disease Activity in Immune Checkpoint Inhibitor-Induced Inflammatory Arthritis
Laura Cappelli¹, Cyd Eaton¹, Yunzhi Wang¹, Michelle Jones² and Clifton Bingham³, ¹Johns Hopkins School of Medicine, Baltimore, MD, ²Johns Hopkins School of Medicine, Pittsburgh, PA, ³Johns Hopkins University, Baltimore, MD
Background/Purpose: Immune checkpoint inhibitor-induced inflammatory arthritis (ICI-IA) is an impactful and often persistent side effect of cancer immunotherapy that can lead to permanent joint damage…
Abstract Number: 2180 • ACR Convergence 2024
The Association Between Age at Diagnosis and Patient-Reported Outcomes in Patients with Vasculitis
Jessica Bloom¹, Kaci Pickett-Nairne², Lori Silveira², David Cuthbertson³, Carol McAlear⁴, Peter Merkel⁴ and Karen James⁵, and the Vasculitis Clinical Research Consortium, ¹University of Colorado, Denver, CO, ²University of Colorado, Aurora, CO, ³University of South Florida, Tampa, FL, ⁴University of Pennsylvania, Philadelphia, PA, ⁵University of Utah, Salt Lake City, UT
Background/Purpose: Vasculitis is a chronic autoimmune condition that significantly impacts patients’ quality of life. It is unknown whether the degree of this impact varies based…
Abstract Number: 2476 • ACR Convergence 2024
The Impact of Systemic Sclerosis Manifestations on Survival and Humanistic Burden: A Targeted Literature Review
vanessa smith¹, Zoe Marjenberg² and Elizabeth Volkmann³, ¹Ghent University Hospital, Gent, Belgium, ²Maverex Ltd, North Shields, United Kingdom, ³University of California, Department of Medicine, Los Angeles, CA, USA, Los Angeles
Background/Purpose: Systemic sclerosis (SSc) is a rare autoimmune disease with multiple disease manifestations, including cutaneous fibrosis, musculoskeletal inflammation, Raynaud phenomenon, calcinosis and digital ulceration. Internal…
Abstract Number: 0398 • ACR Convergence 2024
Validation of Patient-Reported Outcomes Measurement Information System® (PROMIS®) Pediatric Measures for Children with Chronic Nonbacterial Osteomyelitis Using the CHOIR Data
Mary Eckert¹, Eveline Wu², Melissa Oliver³, Joshua Scheck⁴, Sivia Lapidus⁵, Ummusen Kaya Akca⁶, Shima Yasin⁷, Aleksander Lenert⁸, Sara Stern⁹, Antonella insalaco¹⁰, Manuela Pardeo¹⁰, Gabriele Simonini¹¹, Edoardo Marrani¹², Xing Wang¹³, Bin Huang¹⁴, Leonard Kovalick¹⁵, Natalie Rosenwasser¹⁶, Erin Balay-Dustrude¹⁷, Gabriel Casselman¹⁶, Liau Adriel¹⁸, Ava Klein¹⁸, Yurong Shao⁴, Claire Yang⁴, Molly Briggs⁴, Emily Deng⁴, Iris Hamilton⁴, Ethan Mueller¹⁶, Elise Machrone⁴, Paige Trunnel⁴, Doaa Mosa¹⁹, Lori Tucker²⁰, Hermann Girschick²¹, Ronald Laxer²², Georgina Tiller²³, Jonathan Akikusa²⁴, Christian Hedrich²⁵, Karen Onel²⁶, Fatma Dedeoglu²⁷, Marinka Twilt²⁸, Seza Ozen²⁹, Polly Ferguson³⁰, Laura Schanberg³¹, Bryce Reeve³² and Yongdong (Dan) Zhao³³, ¹Seattle Children's, Mercer Island, WA, ²University of North Carolina School of Medicine, Chapel Hill, NC, ³Indiana University, Indianapolis, IN, ⁴Seattle Children's Hospital, Seattle, ⁵Hackensack University Medical Center, Montclair, NJ, ⁶Hacettepe University, Division of Pediatric Rheumatology, Department of Pediatrics, Faculty of Medicine, Ankara, Turkey, ⁷University of Iowa Carver College of Medicine, Abu Dhabi, United Arab Emirates, ⁸University of Iowa, Iowa City, IA, ⁹University of Utah, Salt Lake City, UT, ¹⁰IRCCS Ospedale Pediatrico Bambino Gesù, Rome, Italy, ¹¹Meyer Children Hospital IRCCS; NEUROFARBA Department, University of Florence, Florence, Italy, ¹²University of Florence, Firenze, Florence, Italy, ¹³Biostatistics Epidemiology and Analytics in Research, Seattle Children’s Research Institute, Seattle, WA, ¹⁴Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cinciannati, OH, ¹⁵UNC Health Care, Durham, NC, ¹⁶Seattle Children's Hospital, Seattle, WA, ¹⁷University of Washington, Seattle, WA, ¹⁸Seattle Children’s Research Institute, University of Washington, Seattle, ¹⁹Mansoura University Hospital, Mansoura City, Egypt, ²⁰BC Children's Hospital, Vancouver, BC, Canada, ²¹Vivantes Clinic Friedrichshain, Wuerzburg, Germany, ²²SickKids, Toronto, ON, Canada, ²³University of British Columbia - Vancouver, Vancouver, BC, Canada, ²⁴Royal Children's Hospital, Parkville, Victoria, Australia, ²⁵University of Liverpool, Liverpool, United Kingdom, ²⁶HSS, New York, NY, ²⁷Boston Children's Hospital, Boston, MA, ²⁸Alberta Children's Hospital, Calgary, AB, Canada, ²⁹Department of Pediatrics, Hacettepe University, Ankara, Turkey, ³⁰University of Iowa Carver College of Medicine, Iowa City, IA, ³¹Duke University Medical Center, DURHAM, NC, ³²Duke University School of Medicine, Durham, ³³University of Washington, Redmond, WA
Background/Purpose: Chronic nonbacterial osteomyelitis (CNO) is an autoinflammatory bone disease. It is critical to capture the child’s health-related quality of life impact using validated patient-reported…

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