ReviewPediatric rheumatology online journal2026
Outcome measures and monitoring framework in juvenile systemic sclerosis: bridging routine care and clinical trials.
Review in Pediatric rheumatology online journal, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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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.
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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.
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Authors and funding
2 authors.
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Abstract
introductionJuvenile systemic sclerosis (jSSc) is an orphan multisystem autoimmune disease that can cause significant morbidity during childhood and can lead to significant worsening of quality of life. The pathophysiological features are identical with adult-onset systemic sclerosis (SSc), jSSc exhibits a distinct clinical phenotype characterized by a significantly higher prevalence of diffuse cutaneous involvement, frequent overlap syndromes, distinct autoantibody profiles, and different long-term survival trajectories. Historically, the evaluation of jSSc has relied heavily on the extrapolation of adult outcome measures, which fail to account for developmental physiology, somatic growth, and pediatric-specific feasibility constraints. AREAS COVERED: This review provides a comprehensive overview of indicators of disease activity and severity which might be used in daily clinical practice and adapted as outcome measures in future clinical trials. It includes global outcome measures, organ-specific outcomes (including skin, pulmonary, cardiac, gastrointestinal, musculoskeletal, renal, and vascular involvement), patient-reported outcome measures (PROMs), and clinician-reported outcomes (ClinROs). The performance of adult indices within pediatric cohorts are evaluated, if applicable. Additionally, we analyze severity scores like the Juvenile Systemic Sclerosis Severity Score (J4S) alongside modern consensus metrics derived from the international Hamburg symposia. We emphasize the integration of pediatric-adapted clinical assessments, quantitative imaging, and patient and physician related outcomes. EXPERT OPINION: The development of outcome measure in jSSc requires a paradigm shift from static severity scores to dynamic, multi-dimensional indicators capable of differentiating reversible inflammatory activity from potential permanent damage accrual. Validating pediatric-specific thresholds for physiological and cutaneous change remains an urgent priority. Over the next decade, the integration of artificial intelligence (AI)-driven quantitative imaging, decentralized home-based digital health tools, and molecular biomarkers probably will gain an essential role to optimize clinical trial readiness and personalize therapeutic strategies for children with systemic sclerosis. CLINICAL TRIAL NUMBER: Not applicable.
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