ENS@T aims to improve the understanding of genetics, tumorigenesis and hypersecretion in patients with adrenal tumors and associated familial syndromes. It is intended to improve the prediction of recurrence and the treatment of malignant adrenal tumors, which are particularly rare.
Aim of the study
The European Network for the Study of Adrenal Tumours (ENS@T, www.ensat.org) is an association of specialized clinical centers in Europe that have set themselves the task of systematically investigating the complaints, symptoms, secondary diseases and mortality of these various tumours. In addition to a patient registry, our network also collects blood, urine and tumor samples in order to improve the diagnosis of adrenal tumors in the future and to create the conditions for proposing a therapy that is even better tailored to the individual.
Who can take part?
Patients with adrenal carcinoma, pheochromocytoma/paraganglion, aldosterone-producing and non-aldosterone adrenal adenomas
Procedure
Within the ENS@T registry, data such as time and first symptoms of the disease, time of diagnosis, physical examination findings at the time of diagnosis and during follow-up care (height, weight, BMI, hip circumference, waist circumference), laboratory chemical and imaging findings at the time of diagnosis and during follow-up care (hormone values, liver values, blood lipid values, inflammation values, results of scintigraphic and X-ray examinations), as well as therapies carried out (surgery, radiation, medication) and, in addition, data on concomitant diseases at the time of diagnosis and during the further course of the disease. You also have the option of documenting your symptoms in an electronic symptom diary using an app developed for this purpose (NAPACAPP).
Compensation
None
Original study name
European registry and biobank for patients with adrenal carcinoma, pheochromocytoma/paraganglion, aldosterone-producing and non-aldosterone adrenal adenomas
BASEC number
2017-00771
Financial support from
University Hospital Zurich