The European Registry on Cushing's syndrome: 2-year experience. Baseline demographic and clinical characteristics
(2011) European Journal of Endocrinology — Vol. 165, n° 3, p. 383-392 (2011)
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- OBJECTIVE: The European Registry on Cushing's syndrome (ERCUSYN) is designed to collect prospective and follow-up data at EU level on Cushing's syndrome (CS). DESIGN AND METHODS: Baseline data on 481 CS patients (390 females, 91 males; mean age (±s.d.): 44±14 years) collected from 36 centres in 23 countries, including new patients from 2008 and retrospective cases since 2000. Patients were divided into four major aetiologic groups: pituitary-dependent CS (PIT-CS) (66%), adrenal-dependent CS (ADR-CS) (27%), CS from an ectopic source (ECT-CS) (5%) and CS from other aetiologies (2%). RESULTS: Proportion of men in the ECT-CS group was higher than in the other groups (P<0.05). The ADR-CS group was older than the PIT-CS (P<0.05). Prevalence of hirsutism (92%) and diabetes (74%) in ECT-CS was higher than in the other groups (P<0.05 and P<0.01 respectively). PIT-CS had more skin alterations, menstrual irregularities and hirsutism than ADR-CS (P<0.01). Reduced libido was more prevalent in men than women (P<0.01). Prevalence of spine osteoporosis was higher in men than women (P<0.05), and males had more vertebral and rib fractures than females (52 vs 18% for vertebrae; P<0.001 and 34 vs 23% for ribs; P<0.05). ECT-CS consulted a diabetologist more frequently than ADR-CS (P<0.05), while a gynaecologist was consulted more often by women with PIT-CS or ADR-CS than with ECT-CS (P<0.05). Overall, weight gain was more common in women than men (P<0.01). CushingQoL and EuroQoL visual analogue scale scores did not differ between the groups. CONCLUSIONS: The ERCUSYN project demonstrates a heterogeneous clinical presentation of CS at a European level, depending on gender and aetiology.
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Valassi, E., Santos, A., Yaneva, M., Tóth, M., Strasburger, C. J., Chanson, P., Wass, J. A. H., Chabre, O., Pfeifer, M., Feelders, R. A., Tsagarakis, S., Trainer, P. J., Franz, H., Zopf, K., Zacharieva, S., Lamberts, S. W. J., Tabarin, A., Webb, S. M., & ERCUSYN Study Group. (2011). The European Registry on Cushing’s syndrome: 2-year experience. Baseline demographic and clinical characteristics. European Journal of Endocrinology, 165(3), 383-392. https://doi.org/10.1530/EJE-11-0272 (Original work published 2011)