ERCUSYN owned by ESE, was set up in 2007 with European funding for 3 years. Sustainability has been achieved by agreements with pharma, and generous support from funding partners and Lohmann and Birkner GmBH, who established and maintained the on-line registry and web (www.ercusyn.eu).
On-line brochures for patients and physicians are available in different languages, as well as details on >50 participating centres in 28 European countries. By 2012 over 800 patients are included. Data definitions in detailed guidelines are available on-line. Ethical and legal considerations respecting individual requirements in each centre or country have been introduced.
ERCUSYN has evidenced a heterogeneous clinical presentation of CS, depending on gender and aetiology, and confirms long delays between onset of symptoms and diagnosis, with many specialists consulted who often missed the correct diagnosis. Morbidity at diagnosis is high, with low bone mass, especially in men, and impaired quality of life. Less than half the cohort was actively working, despite a mean age of 44 years. So there is great potential for improvements in the delay to diagnosis, with obvious beneficial consequences both for patients and for the health care systems, due to long-term consequences of delayed diagnosis and increased morbidity.
ERCUSYN represents the largest prospective collaboration of CS in Europe, with potential for improving the care of patients, and may be used as a rare disease registry for new orphan drugs to be evaluated. It can be liaised to the European Medicinal Agency-regulated, industry-required post-marketing surveillance studies, to follow safety and efficacy in the long-term outcomes in clinical practice conditions. Through the ESE this network may be used to disseminate information and encourage further interaction between endocrinologists across Europe.
Reference: Valassi E, et al. The European Registry on Cushings Syndrome (ERCUSYN): 2 year experience. Baseline demographic and clinical characteristics. Eur J Endocrinol 2011 165 383392.