Endocrine Abstracts

The European Registry on Cushing’s syndrome (ERCUSYN) is a project aimed at gathering data at EU level on clinical features, diagnostic procedures and therapeutic strategies in CS patients. The creation of this large European database is expected to provide comprehensive information on all stages of the disease from the first diagnosis to long-term follow-up. This ultimately should result in earlier recognition of CS and all its co-morbidities, and assist clinicians in considering and treating all possible manifestations of the disease, thus improving long-term prognosis.

The ERCUSYN database currently comprises data on 630 patients from 50 participating centres in 28 European countries. An initial analysis of baseline demographic and clinical data in 481 patients has been recently published. It showed differences in clinical presentation depending on gender and etiology, confirmed a long delay between onset of symptoms and diagnosis of CS, with a high number of specialists consulted who often missed the correct diagnosis. Furthermore, morbidity at diagnosis resulted high, with low bone mass, especially in men. Quality of life was impaired and less than half the cohort was actively working at the time of diagnosis of CS. Thus, there is great potential for improvements in reducing the time to diagnosis, which would have obvious consequences for patients and for the health care systems. In this presentation, updated results from the ERCUSYN database will be shown and future perspectives will be discussed.

In conclusion, ERCUSYN represents the largest collaboration of endocrine centres in Europe and has potentials to provide new insights into the diagnostic and therapeutic challenges of CS and to improve the care of patients with CS.

Acknowledgements: ERCUSYN was initially funded by the EU PHP 800200 and by the European Society of Endocrinology.

Declaration of interest: The authors declare that there is no conflict of interest that could be perceived as prejudicing the impartiality of the research project.

Funding: This work was supported, however funding details are unavailable.