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

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The German Adrenocortical Carcinoma (ACC) Registry - Establishment and first results. / German Adrenal Network GANIMED.

In: Hormone and Metabolic Research, Vol. 36, No. 6, 01.01.2004, p. 112 - P62.

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German Adrenal Network GANIMED. / The German Adrenocortical Carcinoma (ACC) Registry - Establishment and first results. In: Hormone and Metabolic Research. 2004 ; Vol. 36, No. 6. pp. 112 - P62.

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@article{840b5cb5a96a4f30987f41f42b30ffe0,
title = "The German Adrenocortical Carcinoma (ACC) Registry - Establishment and first results",
abstract = "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 (www.nebennierenkarzinom.de) 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.",
author = "M Fassnacht and S Hahner and N Banfelder and D Weismann and U Maeder and T Parlowsky and P Bucsky and P Langer and M Rothmund and M Brauckhoff and N Schlenz and M Morcos and W Arlt and M Reincke and B Allolio and {German Adrenal Network GANIMED}",
year = "2004",
month = jan,
day = "1",
doi = "10.1055/s-2004-830843",
language = "English",
volume = "36",
pages = "112 -- P62",
journal = "Hormone and Metabolic Research",
issn = "0018-5043",
publisher = "Thieme Publishing",
number = "6",
note = "Annual Meeting of the Endocrine Society 2004, 86th ; Conference date: 01-01-2004",

}

RIS

TY - JOUR

T1 - The German Adrenocortical Carcinoma (ACC) Registry - Establishment and first results

AU - Fassnacht, M

AU - Hahner, S

AU - Banfelder, N

AU - Weismann, D

AU - Maeder, U

AU - Parlowsky, T

AU - Bucsky, P

AU - Langer, P

AU - Rothmund, M

AU - Brauckhoff, M

AU - Schlenz, N

AU - Morcos, M

AU - Arlt, W

AU - Reincke, M

AU - Allolio, B

AU - German Adrenal Network GANIMED

PY - 2004/1/1

Y1 - 2004/1/1

N2 - 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 (www.nebennierenkarzinom.de) 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.

AB - 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 (www.nebennierenkarzinom.de) 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.

U2 - 10.1055/s-2004-830843

DO - 10.1055/s-2004-830843

M3 - Conference article

VL - 36

SP - 112 - P62

JO - Hormone and Metabolic Research

JF - Hormone and Metabolic Research

SN - 0018-5043

IS - 6

T2 - Annual Meeting of the Endocrine Society 2004, 86th

Y2 - 1 January 2004

ER -