The European Registry on Cushings syndrome (ERCUSYN) is designed to collect prospective and follow-up data at EU level on patients with Cushings syndrome (CS). Baseline data on 481 CS patients (390 females, 91 males; mean age (±S.D.): 44±14 years) collected from 36 centres in 23 countries. This cohort included new patients since 2008 and retrospective cases since 2005. Patients were divided into four major etiologic 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 etiologies (OTH-CS) (2%). Proportion of men in the ECT-CS group was significantly higher than in the other etiologic groups (P<0.05). Patients in the ADR-CS group were significantly older than those in the PIT-CS group (P<0.05).
Prevalence of hirsutism and diabetes in ECT-CS patients was 92 and 74%, respectively, which was significantly higher as compared with the other etiologic groups (P<0.05 for hirsutism and P<0.01 for diabetes). Patients with PIT-CS had significantly more skin alterations, menstrual irregularities and hirsutism than those with ADR-CS (P<0.01). Reduced libido was more prevalent in men than in women (P<0.01). Prevalence of osteoporosis at spine was significantly higher in men as compared with women (P<0.05), and males had significantly more vertebral and rib fractures than females (52 vs 18% for vertebrae; P<0.001; 34 vs 23% for ribs; P<0.05). Patients with ECT-CS consulted a diabetologist more frequently than those with ADR-CS (P<0.05), while a gynecologist was consulted more often by women with either PIT-CS or ADR-CS than those in the ECT-CS group (P<0.05). Overall, weight gain was significantly more common in women as compared with men (P<0.01). EuroQoL-VAS score in PIT-CS was significantly better than in ADR-CS (P<0.05), while CushingQoL score did not differ between groups. The ERCUSYN project allows an analysis of the heterogeneous clinical presentation and course of CS at a European level, depending on gender and etiology.
Supported by a PHP grant 800200 of the EU.
30 Apr - 04 May 2011
European Society of Endocrinology