title: The European Registry on Cushing's syndrome: 2-year experience. Baseline demographic and clinical characteristics.
abstract: 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).
  
  
  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.
authors.affiliation: IIB-Sant Pau and Department of Endocrinology/Medicine, Hospital Sant Pau, UAB and Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBER-ER, Unidad 747), ISCIII; Pare Claret 167, 08025 Barcelona, Spain. evalassi@santpau.cat
authors.forename: Elena
authors.initials: E
authors.lastname: Valassi
authors.forename: Alicia
authors.initials: A
authors.lastname: Santos
authors.forename: Maria
authors.initials: M
authors.lastname: Yaneva
authors.forename: Miklós
authors.initials: M
authors.lastname: Tóth
authors.forename: Christian J
authors.initials: CJ
authors.lastname: Strasburger
authors.forename: Philippe
authors.initials: P
authors.lastname: Chanson
authors.forename: John A H
authors.initials: JA
authors.lastname: Wass
authors.forename: Olivier
authors.initials: O
authors.lastname: Chabre
authors.forename: Marija
authors.initials: M
authors.lastname: Pfeifer
authors.forename: Richard A
authors.initials: RA
authors.lastname: Feelders
authors.forename: Stylianos
authors.initials: S
authors.lastname: Tsagarakis
authors.forename: Peter J
authors.initials: PJ
authors.lastname: Trainer
authors.forename: Holger
authors.initials: H
authors.lastname: Franz
authors.forename: Kathrin
authors.initials: K
authors.lastname: Zopf
authors.forename: Sabina
authors.initials: S
authors.lastname: Zacharieva
authors.forename: Steven W J
authors.initials: SW
authors.lastname: Lamberts
authors.forename: Antoine
authors.initials: A
authors.lastname: Tabarin
authors.forename: Susan M
authors.initials: SM
authors.lastname: Webb
mesh_terms: D000293:Adolescent; D000310:Adrenal Gland Neoplasms / Q000150:complications; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001851:Bone Diseases, Metabolic / Q000209:etiology; D015331:Cohort Studies; D003480:Cushing Syndrome / Q000150:complications / Q000453:epidemiology* / Q000209:etiology; D005060:Europe / Q000453:epidemiology; D005260:Female; D050723:Fractures, Bone / Q000209:etiology; D006801:Humans; D008297:Male; D008875:Middle Aged; D010911:Pituitary Neoplasms / Q000150:complications; D015995:Prevalence; D011446:Prospective Studies; D011788:Quality of Life; D012042:Registries; D012189:Retrospective Studies