Established in 2025, the GLADEL Pediatric Group was created to address an unmet need and fulfill a shared vision: to establish a regional platform dedicated to advancing the study of childhood lupus in Latin America. Today, the group brings together pediatric rheumatologists from over 16 Latin American countries, fostering a collaborative network built on scientific rigor and the development of knowledge tailored to the region’s realities. Its mission is to sustain joint efforts that enhance care and transform the lives of children and adolescents living with lupus across Latin America.

GLADEL Pediatric Group has published “Delay in referral, diagnosis, and treatment in pediatric patients with juvenile systemic lupus erythematosus: A systematic review” (DOI: 10.1097/RHU.0000000000002284), and its ongoing project is presented below. 

Psychosocial and economic impact of juvenile Systemic Lupus Erythematosus in Latin America.
 

Objectives

• Measure the psychological and social impact on the families of Latin American patients with jSLE.

Methods

• A cross-sectional, multicenter, multinational study including >400 caregivers of pediatric patients diagnosed with SLE.
• Phase 1. Transcultural adaptation of the questionnaires related to the impact.
• Phase 2. Cross-sectional measurement of psychosocial, economic, and clinical information.

Expected results

• Generate detailed data on the most affected dimensions, the intensity of the impact, and the most susceptible areas to intervention in families with jSLE.
• Identify risk profiles for a higher impact of jSLE.

Project strategic value

• Design of interventions that prevent family burnout.
• Provide critical insights for discussions with authorities and decision-makers.
• Strengthen a collaborative network of Latin American researchers on jSLE.