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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). 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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“From % to % of patients with endogenous CS have DM, and % to % have defective glucose tolerance, so the overall prevalence of glucose metabolism impairments can come close to %, as shown in Table (, , -).”
From Glucose Metabolism Abnormalities in Cushing Syndrome: From Molecular Basis to Clinical Management (2017) · cites this paper as [187]
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Self-citation
Metadata
- Authors
- 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.
- Affiliations
- Universitat Autònoma de Barcelona (ES)
- Medical University of Sofia (BG)
- Semmelweis University (HU)
- Charité – Universitätsmedizin Berlin (DE)
- Université Paris-Sud (FR)
- Churchill Hospital (GB)
- Ljubljana University Medical Centre (SI)
- Erasmus MC (NL)
- Polyclinic General Hospital (GR)
- The Christie Hospital (GB)
- Centre Hospitalier Universitaire de Bordeaux (FR)
- Corresponding author
- Valassi, Elena
- ORCID
- Venue
- European Journal of Endocrinology
- Publisher
- Oxford University Press (OUP)
- Published
- 2011-09
- Volume
- 165
- Issue
- 3
- Pages
- 383-392
- ISSN
- 0804-4643 (ISSN-L)
- 1479-683X
- OpenAlex
- W2171877884
- Semantic Scholar
- 3321b1ce595761b981c3e19ea91e6efc18a85c8e
- Cited by
- 402
- References
- 36
- Citations by year
- 2026: 28 · 2025: 25 · 2024: 27 · 2023: 29 · 2022: 44 · 2021: 31 · 2020: 27 · 2019: 24 · 2018: 35 · 2017: 20 · 2016: 23 · 2015: 38 · 2014: 19 · 2013: 15 · 2012: 15
- FWCI
- 12.86
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- European Journal of Endocrinology (publishedVersion)
- PubMed (publishedVersion)
- Research Explorer (The University of Manchester) (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
- Digital Access to Libraries (Université catholique de Louvain (UCL), l'Université de Namur (UNamur) and the Université Saint-Louis (USL-B)) (submittedVersion)
- Funders
- European Commission
- Topics
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Pituitary Gland Disorders and Treatments
- Health Sciences › Medicine › Surgery › Adrenal and Paraganglionic Tumors
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Adrenal Hormones and Disorders
- Keywords
- Cushing's syndrome, pituitary-dependent Cushing's disease, ectopic ACTH syndrome, clinical features, sex differences, hirsutism, diabetes mellitus, osteoporosis, quality of life, EuroQol, patient registry
- MeSH terms
- Adolescent, Adrenal Gland Neoplasms, Adult, Aged, Aged, 80 and over, Bone Diseases, Metabolic, Cushing Syndrome, Europe, Female, Humans, Male, Middle Aged, Pituitary Neoplasms, Prospective Studies, Quality of Life, Registries, Retrospective Studies, Cohort Studies, Prevalence, Fractures, Bone
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