BackgroundHerein we describe the history, design, and rationale of the new Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry and present the characteristics of patients with juvenile idiopathic arthritis (JIA) enrolled in the first 12 months of operation.MethodsThe CARRA Registry began prospectively collecting data in the United States and Canada in July 2015 to evaluate the safety of therapeutic agents in persons with childhood-onset rheumatic disease, initially restricted to JIA. Secondary objectives include the evaluation of disease outcomes and their associations with medication use and other factors. Data are collected every 6 months and include clinical assessments, detailed medication use, patient-reported outcomes, and safety events. Follow-up is planned for at least 10 years for each participant and is facilitated by a telephone call center.ResultsAs of July 2016, 1192 patients with JIA were enrolled in the CARRA Registry at 49 clinical sites. At enrollment, their median age was 12.4 years old and median disease duration was 2.6 years. Owing to preferential enrollment, patients with systemic JIA (13%) and with a polyarticular course (75%) were over-represented compared to patients in typical clinical practice. Approximately 49% were currently using biologic agents and ever use of oral glucocorticoids was common (47%). The CARRA Registry provides safety surveillance data to pharmaceutical companies to satisfy their regulatory requirements, and several independently-funded sub-studies that use the Registry infrastructure are underway.ConclusionThe new CARRA Registry successfully enrolled nearly 1200 participants with JIA in the first 12 months of its operation. Sustainable funding has been secured from multiple sources. The CARRA Registry may serve as a model for the study of other uncommon diseases.
Table of ContentsP1 Serologic evidence of gut-driven systemic inflammation in juvenile idiopathic arthritisLampros Fotis, Nur Shaikh, Kevin Baszis, Anthony French, Phillip TarrP2 Oral health and anti-citrullinated peptide antibodies (ACPA) in juvenile idiopathic arthritisSriharsha Grevich, Peggy Lee, Sarah Ringold, Brian Leroux, Hannah Leahey, Megan Yuasa, Jessica Foster, Jeremy Sokolove, Lauren Lahey, William Robinson, Joshua Newsom, Anne StevensP3 Novel autoantigens for endothelial cell antibodies in pediatric rheumatic diseases identified by proteomicsRie Karasawa, Mayumi Tamaki, Megumi Tanaka, Toshiko Sato, Kazuo Yudoh, James N. JarvisP4 Transcriptional profiling reveals monocyte signature associated with JIA patient poor response to methotrexateHalima Moncrieffe, Mark F. Bennett, Monica Tsoras, Lorie Luyrink, Huan Xu, Sampath Prahalad, Paula Morris, Jason Dare, Peter A. Nigrovic, Margalit Rosenkranz, Mara Becker, Kathleen M. O’Neil, Thomas Griffin, Daniel J. Lovell, Alexei A. Grom, Mario Medvedovic, Susan D. ThompsonP5 A multi-dimensional genomic map for polyarticular juvenile idiopathic arthritisLisha Zhu, Kaiyu Jiang, Laiping Wong, Michael J Buck, Yanmin Chen, Halima Moncrieffe, Laura Brungs, Tao Liu, Ting Wang, James N JarvisP6 Tocilizumab for treatment of children with refractory JIAKhaled Alsaeid, Jasim Alfailakawi, Hamid Alenezi, Hazim AlsaeedP7 Clinical characteristics of the initial patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) RegistryTim Beukelman, Marc Natter, Norm Ilowite, Kelly Mieszkalski, Grendel Burrell, Brian Best, Helen Bristow, Shannon Carr, Anne Dennos, Rachel Kaufmann, Yukiko Kimura, Laura SchanbergP8 Comparative performance of small and large clinical centers in a comprehensive pediatric rheumatology disease registryPeter R BlierP9 Clinical characteristics of children with membranous lupus nephritis: The Childhood Arthritis and Rheumatology Research Alliance Legacy RegistryAlexis Boneparth, Scott E. Wenderfer, L. Nandini Moorthy, Suhas M. Radhakrishna, Anna Carmela P. Sagcal-Gironella, Emily von SchevenP10 Rituximab use in pediatric lupus anticoagulant hypoprothrombinemia syndrome - a two center experienceKader Cetin Gedik, Salma Siddique, Cassyanne L. Aguiar, Doruk ErkanP11 Predictors of complementary and alternative medicine use and response in children with musculoskeletal conditionsEzra Cohen, Yvonne Lee, Michelle Dossett, Darshan Mehta, Roger DavisP12 Comparison of pediatric rheumatology and nephrology survey results for the treatment of refractory proliferative lupus nephritis and renal flare in juvenile SLEMileka Gilbert, Beatrice Goilav, Esra Meidan, Joyce Hsu, Alexis Boneparth, Anabelle Chua, Stacy Ardoin, Scott E. Wenderfer, Emily Von Scheven, Natasha M. RuthP13 Transitioning lupus patients from pediatric to adult rheumatologyJoyce Hui-Yuen, Kader Cetin Gedik, Liza Bermudez, Ashlea Cook, Lisa Imundo, Amy Starr, Andrew Eichenfield, Anca AskanaseP14 The systemic juvenile idiopathic arthritis cohort of the Childhood Arthritis & Rheumatolo...
Results 105 patients with dyspepsia were identified; 55 already listed for endoscopy. 143 prescriptions for HP eradication were reviewed; 95% of these did not conform to a recognised regimen. Most errors were in dosing or duration but 38% used a H 2 receptor antagonist instead of a PPI and 31% included only one antibiotic. The 55 patients undergoing gastroscopy had all received prior HP eradication therapy. Mean symptom duration was 33.8 months. The clinical diagnosis matched endoscopic findings in only 18%. 9% were found to have peptic ulcer disease and "gastritis" was recorded for 35%. There was one gastric cancer and 10 oesophageal cancers. Seven of these 11 patients had dysphagia and malignancy had been suspected; 4/11 malignancies were not suspected. Only 5.5% of endoscopies were normal. Conclusion Empirical management of dyspepsia in Malawi is poor. HP eradication therapy is given frequently but almost always incorrectly. This is likely to promote antibiotic resistance and make subsequent HP eradication more difficult. Referral criteria for endoscopy are not clear, yet the yield of serious pathology is surprisingly high. The low rate of normal endoscopic findings contrasts with UK practice but may be explained by over-diagnosis of "gastritis". In light of this audit, guidelines on dyspepsia management were developed and implemented. They emphasise correct medical management in young dyspeptic patients without alarm symptoms and urgent referral for gastroscopy if malignancy is suspected at any age.
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