Pediatric Autoimmune Disease: Comprehensive Characterization of a Rheumatology-Dermatology Cohort and Prospective Registry Development

Overview

Pediatric autoimmune diseases cause significant morbidity from the conditions themselves and their treatment. Juvenile dermatomyositis (JDM) is a debilitating autoinflammatory disease characterized by proximal muscle weakness and pathognomonic cutaneous manifestations. Functional impairment and visible disfigurement may reduce quality of life. The UCSF Benioff Children’s Hospital interdisciplinary rheumatology-dermatology clinic provides an important opportunity to understand integrated pediatric autoimmune care by comprehensively characterizing this patient cohort from clinic inception to current day. In this study, we will develop a uniform combined patient data set and develop the workflow to enroll new clinic patients in a prospective registry. We will also perform a pilot study to determine the skin tissue-specific inflammatory infiltrate of pediatric patients with JDM to better understand JDM pathogenesis and provide rationale for development of targeted therapies. And lastly, we endeavor to measure pediatric patient’s subjective experience of autoimmune disease using the modified Cutaneous Body Image survey.

Status

This project was funded through a 2023 PeDRA Research Fellowship Grant.