Keywords
review
Cushing syndrome
rare diseases
translational research
biomedical
comorbidity
diagnosis
treatment outcome
clinical decision-making
How to Cite
Abstract
Context: Cushing’s syndrome (CS) is a rare endocrine disorder associated with high morbidity and mortality. Its low prevalence and clinical heterogeneity challenge large-scale population studies, highlighting the role of patient registries as key sources of information for epidemiological surveillance, clinical research, and public health decision-making.
Objective: To describe and analyze the clinical, therapeutic, and outcome characteristics of population-based registries of Cushing’s syndrome worldwide.
Methodology: A systematic literature review was conducted in PubMed up to December 2024. Articles in English and Spanish reporting population-based registries of adult patients with Cushing’s syndrome were included. The search was complemented by manual reference screening.
Results: Fifteen articles corresponding to twelve registries were identified. Most registries originated in Europe, notably the multinational ERCUSYN registry. Only one study from Argentina represented Latin America. Significant heterogeneity was found in diagnostic criteria, treatment approaches, and remission definitions. The most frequent comorbidities were hypertension and type 2 diabetes. Reported mortality ranged from 0% to 26.5%, depending on follow-up duration.
Conclusions: Population-based registries are essential tools to improve clinical and epidemiological understanding of Cushing’s syndrome. However, their geographic coverage remains limited, and methodological standardization is insufficient. There is a pressing need to develop registries in underrepresented regions such as Latin America.
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