ArticlePediatric rheumatology online journal2017
The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months.
Article in Pediatric rheumatology online journal, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 60 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
60 citing papers in PubMed, 102 citations in OpenAlex.
- Clinical Characterization of Juvenile Fibromyalgia in a Multicenter Cohort of Adolescents Enrolled in a Randomized Clinical Trial.Arthritis care & research · 2023Trial
- Model-Based Selection and Recommendation for Subcutaneous Abatacept Dose in Patients With Polyarticular Juvenile Idiopathic Arthritis.Journal of clinical pharmacology · 2021Trial
- Clinical Disease Manifestations Associated With Tumor Necrosis Factor Inhibitor Nonresponse in Juvenile Spondyloarthritis.The Journal of rheumatology · 2026Article
- Cumulative Social Disadvantage and Disease Activity in Juvenile Idiopathic Arthritis: A Childhood Arthritis and Rheumatology Research Alliance Registry Study.Arthritis care & research · 2026Article
- Baseline Clinical Features and Biomarker Profiles of the Childhood Arthritis and Rheumatology Research Alliance Systemic Juvenile Idiopathic Arthritis-Associated Lung Disease Cohort.Arthritis care & research · 2026Article
- Two- and 3-year outcomes of the childhood arthritis and rheumatology research alliance FiRst Line Options for sJIA Treatment (FROST) trial.Pediatric rheumatology online journal · 2026Article
- Sex Differences in PROMIS Pediatric Depressive Symptoms, Anxiety, and Psychological Stress Among Children and Adolescents Living With Pediatric Rheumatic Diseases.The Journal of rheumatology · 2026Article
- Congruence Between Child Self-Reported and Caregiver-Proxy-Reported Health-Related Quality of Life in Children With Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus.The Journal of rheumatology · 2026Observational
- Non-component clinical feature-based machine learning for disease activity risk stratification in juvenile idiopathic arthritis: a multi-center retrospective validation study.Frontiers in pediatrics · 2026Article
- Juvenile Idiopathic Arthritis Registry at King Abdullah Specialized Children's Hospital (JIAR-KASCH) in Riyadh, Saudi Arabia.Saudi medical journal · 2026Article
- Long-term safety of canakinumab in patients with systemic juvenile idiopathic arthritis: 5-year results from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry.Pediatric rheumatology online journal · 2025Article
- Disease activity trajectories in paediatric lupus and associations with socioeconomic factors and patient-reported pain.Lupus science & medicine · 2025Article
- Disease activity at two consecutive registry visits and subsequent medication escalation for patients with juvenile idiopathic arthritis in the CARRA registry.Pediatric rheumatology online journal · 2025Article
- Patient and Family Perceptions of Real-Time Access to Electronic Health Information: A Social Media Survey.Applied clinical informatics · 2025Article
- Effect of an Electronic Pill Bottle on Hydroxychloroquine Adherence in Pediatric Lupus: Results of a Novel Direct-to-Family Pilot Trial.ACR open rheumatology · 2025Article
- New medicines for childhood-onset systemic lupus erythematosus: an EU perspective on paediatric drug development.Frontiers in medicine · 2025Article
- Racial Disparities and Achievement of the Low Lupus Disease Activity State: A CARRA Registry Study.Arthritis care & research · 2025Article
- Evaluating anchor variables and variation in meaningful score differences for PROMISQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Interleukin (IL)-1/IL-6-Inhibitor-Associated Drug Reaction With Eosinophilia and Systemic Symptoms (DReSS) in Systemic Inflammatory Illnesses.The journal of allergy and clinical immunology. In practice · 2024Article
- Implementation study of the CARRA Uveitis Consensus Treatment Plans: feasibility for clinical practice and applicability for research.Pediatric rheumatology online journal · 2024Observational
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.