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
The ERCUSYN (European Registry on Cushings 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 projects 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.