NCT00453674

Brief Summary

Basic objective of the German Adrenocortical Carcinoma Registry is to improve the care of patients with adrenocortical cancer. The registration of as many patients as possible helps to collect data for the prognosis and prospects of success regarding different treatment plans. This data will be taken into consideration for planning prospective studies. With this registry, the recruitment of patients for prospective studies will be significantly facilitated. In this way - and in cooperation with networks in other countries (e.g. in Italy and France) - a structure allowing systematic improvement of therapy will be developed.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
1,000

participants targeted

Target at P75+ for all trials

Timeline
56mo left

Started Jan 2003

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress84%
Jan 2003Dec 2030

Study Start

First participant enrolled

January 1, 2003

Completed
4.2 years until next milestone

First Submitted

Initial submission to the registry

March 28, 2007

Completed
1 day until next milestone

First Posted

Study publicly available on registry

March 29, 2007

Completed
23.7 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 1, 2030

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

December 1, 2030

Last Updated

August 29, 2025

Status Verified

August 1, 2025

Enrollment Period

27.9 years

First QC Date

March 28, 2007

Last Update Submit

August 24, 2025

Conditions

Adrenocortical Carcinoma

Keywords

Adrenal cancerTreatmentSurgeryMitotane

Study Arms (1)

Adrenocortical carcinoma

Adrenocortical carcinoma

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodNon-Probability Sample
Study Population

Adrenocortical carcinoma patients in Germany (or treated in Germany)

You may qualify if:

  • Histologically confirmed diagnosis of adrenocortical carcinoma

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Wuerzburg

Würzburg, 97080, Germany

RECRUITING

Related Publications (19)

  • Petersenn S, Richter PA, Broemel T, Ritter CO, Deutschbein T, Beil FU, Allolio B, Fassnacht M; German ACC Study Group. Computed tomography criteria for discrimination of adrenal adenomas and adrenocortical carcinomas: analysis of the German ACC registry. Eur J Endocrinol. 2015 Apr;172(4):415-22. doi: 10.1530/EJE-14-0916. Epub 2015 Jan 19.

    PMID: 25599706RESULT

  • Beuschlein F, Weigel J, Saeger W, Kroiss M, Wild V, Daffara F, Libe R, Ardito A, Al Ghuzlan A, Quinkler M, Osswald A, Ronchi CL, de Krijger R, Feelders RA, Waldmann J, Willenberg HS, Deutschbein T, Stell A, Reincke M, Papotti M, Baudin E, Tissier F, Haak HR, Loli P, Terzolo M, Allolio B, Muller HH, Fassnacht M. Major prognostic role of Ki67 in localized adrenocortical carcinoma after complete resection. J Clin Endocrinol Metab. 2015 Mar;100(3):841-9. doi: 10.1210/jc.2014-3182. Epub 2015 Jan 5.

    PMID: 25559399RESULT

  • Erdogan I, Deutschbein T, Jurowich C, Kroiss M, Ronchi C, Quinkler M, Waldmann J, Willenberg HS, Beuschlein F, Fottner C, Klose S, Heidemeier A, Brix D, Fenske W, Hahner S, Reibetanz J, Allolio B, Fassnacht M; German Adrenocortical Carcinoma Study Group. The role of surgery in the management of recurrent adrenocortical carcinoma. J Clin Endocrinol Metab. 2013 Jan;98(1):181-91. doi: 10.1210/jc.2012-2559. Epub 2012 Nov 12.

    PMID: 23150691RESULT

  • Hahner S, Kreissl MC, Fassnacht M, Haenscheid H, Knoedler P, Lang K, Buck AK, Reiners C, Allolio B, Schirbel A. [131I]iodometomidate for targeted radionuclide therapy of advanced adrenocortical carcinoma. J Clin Endocrinol Metab. 2012 Mar;97(3):914-22. doi: 10.1210/jc.2011-2765. Epub 2011 Dec 14.

    PMID: 22170726RESULT

  • Herrmann LJ, Heinze B, Fassnacht M, Willenberg HS, Quinkler M, Reisch N, Zink M, Allolio B, Hahner S. TP53 germline mutations in adult patients with adrenocortical carcinoma. J Clin Endocrinol Metab. 2012 Mar;97(3):E476-85. doi: 10.1210/jc.2011-1982. Epub 2011 Dec 14.

    PMID: 22170717RESULT

  • Reibetanz J, Jurowich C, Erdogan I, Nies C, Rayes N, Dralle H, Behrend M, Allolio B, Fassnacht M; German ACC study group. Impact of lymphadenectomy on the oncologic outcome of patients with adrenocortical carcinoma. Ann Surg. 2012 Feb;255(2):363-9. doi: 10.1097/SLA.0b013e3182367ac3.

    PMID: 22143204RESULT

  • Johanssen S, Hahner S, Saeger W, Quinkler M, Beuschlein F, Dralle H, Haaf M, Kroiss M, Jurowich C, Langer P, Oelkers W, Spahn M, Willenberg HS, Mader U, Allolio B, Fassnacht M. Deficits in the management of patients with adrenocortical carcinoma in Germany. Dtsch Arztebl Int. 2010 Dec;107(50):885-91. doi: 10.3238/arztebl.2010.0885. Epub 2010 Dec 17.

    PMID: 21246024RESULT

  • Fassnacht M, Johanssen S, Fenske W, Weismann D, Agha A, Beuschlein F, Fuhrer D, Jurowich C, Quinkler M, Petersenn S, Spahn M, Hahner S, Allolio B; German ACC Registry Group. Improved survival in patients with stage II adrenocortical carcinoma followed up prospectively by specialized centers. J Clin Endocrinol Metab. 2010 Nov;95(11):4925-32. doi: 10.1210/jc.2010-0803. Epub 2010 Jul 28.

    PMID: 20668036RESULT

  • Brix D, Allolio B, Fenske W, Agha A, Dralle H, Jurowich C, Langer P, Mussack T, Nies C, Riedmiller H, Spahn M, Weismann D, Hahner S, Fassnacht M; German Adrenocortical Carcinoma Registry Group. Laparoscopic versus open adrenalectomy for adrenocortical carcinoma: surgical and oncologic outcome in 152 patients. Eur Urol. 2010 Oct;58(4):609-15. doi: 10.1016/j.eururo.2010.06.024. Epub 2010 Jun 22.

    PMID: 20580485RESULT

  • Fassnacht M, Johanssen S, Quinkler M, Bucsky P, Willenberg HS, Beuschlein F, Terzolo M, Mueller HH, Hahner S, Allolio B; German Adrenocortical Carcinoma Registry Group; European Network for the Study of Adrenal Tumors. Limited prognostic value of the 2004 International Union Against Cancer staging classification for adrenocortical carcinoma: proposal for a Revised TNM Classification. Cancer. 2009 Jan 15;115(2):243-50. doi: 10.1002/cncr.24030.

    PMID: 19025987RESULT

  • Quinkler M, Hahner S, Wortmann S, Johanssen S, Adam P, Ritter C, Strasburger C, Allolio B, Fassnacht M. Treatment of advanced adrenocortical carcinoma with erlotinib plus gemcitabine. J Clin Endocrinol Metab. 2008 Jun;93(6):2057-62. doi: 10.1210/jc.2007-2564. Epub 2008 Mar 11.

    PMID: 18334586RESULT

  • Terzolo M, Angeli A, Fassnacht M, Daffara F, Tauchmanova L, Conton PA, Rossetto R, Buci L, Sperone P, Grossrubatscher E, Reimondo G, Bollito E, Papotti M, Saeger W, Hahner S, Koschker AC, Arvat E, Ambrosi B, Loli P, Lombardi G, Mannelli M, Bruzzi P, Mantero F, Allolio B, Dogliotti L, Berruti A. Adjuvant mitotane treatment for adrenocortical carcinoma. N Engl J Med. 2007 Jun 7;356(23):2372-80. doi: 10.1056/NEJMoa063360.

    PMID: 17554118RESULT

  • Fassnacht M, Hahner S, Polat B, Koschker AC, Kenn W, Flentje M, Allolio B. Efficacy of adjuvant radiotherapy of the tumor bed on local recurrence of adrenocortical carcinoma. J Clin Endocrinol Metab. 2006 Nov;91(11):4501-4. doi: 10.1210/jc.2006-1007. Epub 2006 Aug 8.

    PMID: 16895957RESULT

  • Kimpel O, Bedrose S, Megerle F, Berruti A, Terzolo M, Kroiss M, Mai K, Dekkers OM, Habra MA, Fassnacht M. Adjuvant platinum-based chemotherapy in radically resected adrenocortical carcinoma: a cohort study. Br J Cancer. 2021 Oct;125(9):1233-1238. doi: 10.1038/s41416-021-01513-8. Epub 2021 Aug 16.

    PMID: 34400803RESULT

  • Kimpel O, Schindler P, Schmidt-Pennington L, Altieri B, Megerle F, Haak H, Pittaway J, Dischinger U, Quinkler M, Mai K, Kroiss M, Polat B, Fassnacht M. Efficacy and safety of radiation therapy in advanced adrenocortical carcinoma. Br J Cancer. 2023 Feb;128(4):586-593. doi: 10.1038/s41416-022-02082-0. Epub 2022 Dec 8.

    PMID: 36482186RESULT

  • Kroiss M, Megerle F, Kurlbaum M, Zimmermann S, Wendler J, Jimenez C, Lapa C, Quinkler M, Scherf-Clavel O, Habra MA, Fassnacht M. Objective Response and Prolonged Disease Control of Advanced Adrenocortical Carcinoma with Cabozantinib. J Clin Endocrinol Metab. 2020 May 1;105(5):1461-8. doi: 10.1210/clinem/dgz318.

    PMID: 31900481RESULT

  • Reibetanz J, Rinn B, Kunz AS, Flemming S, Ronchi CL, Kroiss M, Deutschbein T, Pulzer A, Hahner S, Kocot A, Germer CT, Fassnacht M, Jurowich C. Patterns of Lymph Node Recurrence in Adrenocortical Carcinoma: Possible Implications for Primary Surgical Treatment. Ann Surg Oncol. 2019 Feb;26(2):531-538. doi: 10.1245/s10434-018-6999-z. Epub 2018 Nov 15.

    PMID: 30443830RESULT

  • Megerle F, Herrmann W, Schloetelburg W, Ronchi CL, Pulzer A, Quinkler M, Beuschlein F, Hahner S, Kroiss M, Fassnacht M; German ACC Study Group. Mitotane Monotherapy in Patients With Advanced Adrenocortical Carcinoma. J Clin Endocrinol Metab. 2018 Apr 1;103(4):1686-1695. doi: 10.1210/jc.2017-02591.

    PMID: 29452402RESULT

  • Henning JEK, Deutschbein T, Altieri B, Steinhauer S, Kircher S, Sbiera S, Wild V, Schlotelburg W, Kroiss M, Perotti P, Rosenwald A, Berruti A, Fassnacht M, Ronchi CL. Gemcitabine-Based Chemotherapy in Adrenocortical Carcinoma: A Multicenter Study of Efficacy and Predictive Factors. J Clin Endocrinol Metab. 2017 Nov 1;102(11):4323-4332. doi: 10.1210/jc.2017-01624.

    PMID: 29092062RESULT

Related Links

MeSH Terms

Conditions

Adrenocortical CarcinomaAdrenal Gland Neoplasms

Condition Hierarchy (Ancestors)

AdenocarcinomaCarcinomaNeoplasms, Glandular and EpithelialNeoplasms by Histologic TypeNeoplasmsAdrenal Cortex NeoplasmsEndocrine Gland NeoplasmsNeoplasms by SiteAdrenal Cortex DiseasesAdrenal Gland DiseasesEndocrine System Diseases

Study Officials

  • Martin Fassnacht, MD

    University of Wuerzburg

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Martin Fassnacht, MD

CONTACT

49-931-201-36507fassnacht_m@medizin.uni-wuerzburg.de

Michaela Haaf

CONTACT

haaf_m@ukw.de

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Head of Endocrinology

Study Record Dates

First Submitted

March 28, 2007

First Posted

March 29, 2007

Study Start

January 1, 2003

Primary Completion (Estimated)

December 1, 2030

Study Completion (Estimated)

December 1, 2030

Last Updated

August 29, 2025

Record last verified: 2025-08

Locations

DE(1)