In 2006, a number of leading European endocrinologists teamed together to apply to the European Union (EU) call under the Public Health Program and succeeded in getting funding for 3 years (2007-2010), to set up a European Registry on Cushing’s Syndrome (the acronym of which is ERCUSYN). More than a decade after its start, the project is active and has recruited information from over 1600 patients.
Among the aims of the registry are to increase the awareness among general practitioners or primary care physicians throughout Europe, to make an earlier diagnosis and hopefully improve the long term prognosis and “normalize” the increased morbidity and mortality associated with this syndrome if not treated correctly, prevent the impairment in Quality of Life, and set up European guidelines for diagnosis and therapeutic strategy, etc.
From the beginning it was clear that this should be a European initiative, and the European Society of Endocrinology has been a partner from the start, supporting the project in many ways.
The database has been sponsored by the EU, ESE, Novartis, Ipsen and HRA. Currently ERCUSYN involves more than 60 centres from over 29 countries.