The German Adrenocortical Carcinoma (ACC) Registry - Establishment and first results

German Adrenal Network GANIMED

    Research output: Contribution to journalConference articlepeer-review


    ACC is a rare tumor with a poor prognosis. Its low incidence hinders the development of a reliable database on clinical manifestations, prognosis, and the impact of different treatment options. The purpose of the German ACC Registry is to evaluate these aspects in a large retrospective series, and to establish also a prospective database to improve patient care and recruitment for future clinical trials. In June 2003, a structured evaluation form collecting comprehensive information on diagnostic procedures, therapy, and follow-up was developed. All GANIMED (German Adrenal Network: Improving Medical research and Education) centers and the Study Group for Malignant Endocrine Tumors in Childhood were contacted to include patients (diagnosed after 1982) in this registry. A website ( was created containing all information required for patient enrolment. Seventy-six patients (females 63%; males 37%) have been included in the registry until September 2003. The mean age at diagnosis was 39 years (range 0.3–83yrs). Hormone excess was detectable in 54% of the patients. Two patients were diagnosed as stage I (<5cm), 26 as stage II (>5cm), 27 as stage III (advanced locoregional disease), and 21 as stage IV (metastasised disease) at the time of primary diagnosis. Mean tumor size at diagnosis was 11±4cm (3–21cm). Surgery was performed in all patients. During follow up 26/55 patients developed distant metastases. Therefore, at this time 47 of 76 patients have progressed to stage IV. Metastases occurred mainly in lung (47%), liver (30%), and bone (13%). Cytotoxic chemotherapy was administered in 19 patients. 42 patients are still alive and will be followed prospectively. Enrolment into the retrospective registry will be open until December 2004. This registry will allow a detailed analysis of prognostic factors and the present outcome in patients with ACC in Germany. The prospective registry will only include newly diagnosed patients with ACC. Its aims will include improvement in patient care and participation in international therapeutic trials.
    Original languageEnglish
    Pages (from-to)112 - P62
    JournalHormone and Metabolic Research
    Issue number6
    Publication statusPublished - 1 Jan 2004
    EventAnnual Meeting of the Endocrine Society 2004, 86th -
    Duration: 1 Jan 2004 → …


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