Natural history
Baseline medical characteristics of large male and female cohorts; symptom onset and diagnostic delay.
Find authoritative references →Registry analyses have contributed to research on natural history, pediatric and female disease burden, renal and cardiac outcomes, survival, and global patterns of care.
Baseline medical characteristics of large male and female cohorts; symptom onset and diagnostic delay.
Find authoritative references →Evidence that women may experience major organ involvement and require appropriate monitoring.
Find authoritative references →Characterization of symptoms, organ involvement, quality of life, and early disease burden in children.
Find authoritative references →Analyses of chronic kidney disease, proteinuria, dialysis, transplantation, and end-stage renal disease.
Find authoritative references →Research on cardiac events, stroke, rhythm disorders, and organ-specific progression.
Find authoritative references →Longitudinal analyses describing life expectancy and major causes of mortality.
Find authoritative references →Studies describing Registry participants in Latin America and other geographic populations.
Find authoritative references →Observational evaluations of routine-care outcomes and treatment exposure over time.
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