Endocrine Abstracts (2010) 22 S1.6

The European Registry on Cushing's syndrome (ERCUSYN) database: first year experience

Susan Webb1, Alicia Santos1, Peter Trainer2, Christian Strasburger3, Steven Lamberts4, John Wass5, Richard Feelders4 & Holger Franz6

1IIB-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, Barcelona, Spain; 2Department of Endocrinology, Christie Hospital, Wilmslow Road, Manchester, UK; 3Division of Clinical Endocrinology, Department of Medicine CCM, Charité-Universitätsmedizin, Berlin, Germany; 4Department of Internal Medicine, Erasmus Medical Center, Rotterdam, The Netherlands; 5Department of Endocrinology, Oxford Centre for Diabetes, Endocrinology and Metabolism, Churchill Hospital, Oxford, UK; 6Lohmann and Birkner, Berlin, Germany.

The ERCUSYN (European Registry on Cushing’s syndrome (CS)) study is a project funded by the European Commission Public Health Program (PHP 800200), of which the ESE is one of the 41 Partners from 25 countries. The aims include obtaining prospective and follow-up data at EU level on epidemiology, mortality, outcome of therapies, co-morbidities, assessment of diagnostic and therapeutic strategies, quality of life evaluation using a disease-generated questionnaire (CushingQoL) and to increase awareness of CS in Primary Care to shorten delay to diagnosis, aimed at improving long-term prognosis. On the project’s webpage (www.ercusyn.eu) information for patients and general practitioners in different languages are available and a database where newly diagnosed patients -since 2005- with CS are prospectively collected at baseline and periodically after treatment, from centres of excellence throughout Europe.

The ERCUSYN database after 1 year contains data on 154 patients (80% women), with a mean age at diagnosis of 44.9±13.9 years. Only 48 (31%) were actively employed; 72 (47%) were of pituitary, 36 (23%) of adrenal, 12 (8%) of ectopic, and 6 (4%) of other (including cyclical) origin, while data were missing in 28 (18%). Basal morbidity was high: ↑BP in 66%, skin problems in 58%, weight gain in 62%, muscle weakness in 50%, hirsutism in 45% and menstrual irregularities in 37% of females, diabetes mellitus in 31%, depression in 25%, fractures in 21% and ↓ libido in 15%. The rhythm of inclusion has doubled from 6 to 12 months and reached 200 at the end of 2009. The potential of the ERCUSYN database to gather real-life information on diagnosis, treatment and outcome of patients diagnosed with CS throughout Europe is important and can contribute to better evaluate ‘residual’ morbidity present in endocrinologically ‘cured’ CS, especially on cardiovascular, body composition and QoL outcome, which fail to normalize completely.

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