There are special circumstances related to the study of rare disease entities, such as ACC. It is crucial to combine clinical forces, if not simply to collect enough clinical material. There is no other way to (1) engage enough patients in clinical trials to establish genotype–phenotype correlations, (2) to catalogue a library of mutations and (3) to establish new prognostic markers. However, the ultimate goal of a network goes far beyond bringing together clinicians and scientists from different countries with various technical skills, dedicated to research and care of patients with the same disease. The goal is to share ideas, biological materials, techniques, and research projects – and finally to add clinical value.
KeywordsAdrenal Tumor Adrenocortical Carcinoma Adrenocortical Tumor Adrenocortical Adenoma Adrenal Disease
- 1.Arlt W et al (2008) Steroid profiling in the diagnosis and monitoring of adrenocortical cancer – results of the EURINE ACC study of the European Network for the study of adrenal tumors (ENS@T). The endocrine society’s 90th annual meeting 2008, San FranciscoGoogle Scholar
- 3.Fassnacht M et al (2009) For the German adrenocortical carcinoma registry group and the European Network for the study of adrenal tumors members of the german ACC registry group members of the ENSAT ACC working group (in alphabetical order): Bruno Allolio (University of Würzburg, Würzburg, Germany), Eric Baudin (Institut Gustave Roussy, Paris, France), Jerome Bertherat (Institut Cochin, Paris, France), Felix Beuschlein (University of Munich, Munich, Germany), Martin Fassnacht (University of Würzburg, Würzburg, Germany), Massimo Mannelli (University of Florence, Florence, Italy), and Massimo Terzolo (University of Turin, Turin, Italy). Limited prognostic value of the 2004 International Union Against Cancer staging classification for adrenocortical carcinoma: proposal for a Revised TNM Classification. Cancer 115:243–250Google Scholar