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 initial funding to set up a European Registry on Cushing’s Syndrome (ERCUSYN). To date, the project has recruited information from over 2000 patients, from 60 centres covering 26 countries.
The aims of the registry are
- to develop an international collaboration that, by a central patient data collection, allows to grow our general understanding of Cushing’s Syndrome, a rare disorder with an annual incidence of 2-3 new cases per Million inhabitants,
- to increase the awareness around Cushing’s Syndrome among general practitioners or primary care physicians throughout Europe,
- to make an earlier diagnosis,
- to improve the long term prognosis and “normalise” the increased morbidity and mortality associated with this syndrome even if treated correctly,
- to prevent the impairment in Quality of Life
- to set up European guidelines for diagnosis and therapeutic strategy.
All ERCUSYN partners are encouraged to send their scientific ideas on possible data analysis. Proposals will be evaluated by the scientific steering committee. The new deadline for receiving proposals is June 2021 (contact email@example.com for proposals and more information).
The ERCUSYN project welcomes European centres of excellence who work with Cushing’s Syndrome to join and contribute to the project, if they are prepared to include patients and update their outcome periodically. If interested please contact firstname.lastname@example.org
More information about ERCUSYN, the participating centres and published data can be found www.ercusyn.eu
ERCUSYN has received funding from the European Union, Novartis, Ipsen and HRA-Pharma.
Scientific Steering Committee:
- Susan M Webb, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain
- Christian Strasburger, Charité- Universitätsmedizin Berlin (Campus Mitte), Dept of Internal Medicine IV, Division of Endocrinology, Berlin, Germany
- Antoine Tabarin, Centre Hospitalier Universitaire de Bordeaux, Bordeaux, France
- John Newell-Price, University of Sheffield, Sheffield, United Kingdom
- Alicia Santos; Project Manager, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain
- Elena Valassi; Data Quality Control, Hospital de la Santa Creu i Sant Pau, Barcelona, Spain
- Holger Franz, Daniel Thyroke, Lohmann & Birkner Health Care Consulting GmbH, Berlin, Germany