Benutzerspezifische Werkzeuge

Information and Links

KFO252_long

PARTNER CENTERS

Radboud Adrenal Centre (http://www.umcn.nl/Research/Departments/Radboud Adrenal Centre)

The Radboud Adrenal Centre (RAC) serve as an centre of expertise in The Netherlands for the diagnosis and treatment of adrenal diseases, both in children and adults, and to promote top level research on adrenal diseases, especially pheochromocytoma/paraganglioma, congenital adrenal hyperplasia, primary aldosteronism and hyper- and hypocortisolism. Members of the Dresden Adrenal Clinical Research Unit interact closely with those at the RAC.

Universitätsklinikum Würzburg, Medizinische Klinik I, Endokrinologie (http://medizin1.uk-wuerzburg.de/schwerpunkte-und-funktionseinheiten/endokrinologie/)

PROFESSIONAL NETWORKS

PRESSOR (http://www.pressor.org/)

The Pheochromocytoma and paraganglioma RESearch Support Organization, PRESSOR, is an international consortium of health science professionals with strong interests in improving the management and treatment of patients with pheochromocytoma and paraganglioma.

ENS@T (http://www.ensat.org/)

The European Network for the Study of Adrenal Tumors (ENS@T) is a consortium of European-based investigators focused on understanding the genetics, tumorigenesis and inappropriate secretion of hormones in patients with adrenal tumors and associated familial syndromes.

CLINICAL TRIALS & PATIENT REGISTRIES FOR ADRENAL DISORDERS

PMT study (https://pmt-study.pressor.org/)

The Prospective Monoamine-producing Tumor study is an international multicentre prospective study directed at elucidating the catecholamine metabolomic profiles of monoamine-producing tumors — primarily phaeochromocytomas and paragangliomas (PPGLs) — and the utility of catecholamine-related biomarkers for diagnosis and as determinants of clinical presentation.

FIRSTMAPPP (http://clinicaltrials.gov/ct2/show/NCT01371201)

The FIRST randomized study of Malignant Progressive Pheochromocytoma and Paraganglioma (FIRSTMAPPP) is an initiative by members of the Pheo-para alliance patient organization carried out in cooperation with members of PRESSOR and of the European Network for the Study of Adrenal Tumors - Adrenal Cancer (ENS@T-CANCER) consortium funded by the seventh framework program of the European Union.

EURINE-ACT (http://www.ensat.org/eurineact.htm)

EURINE-ACT is an international prospective study initiated by members of the ENS@T consortium that examines the diagnostic and prognostic value of urine steroidobolomics in patients with adrenocortical tumours.

ADIUVO study (http://www.ensat.org/adiuvo.htm)

The ADIUVO study is a prospective, randomized, open-label, controlled, international, phase III trial for patients with adrenal cortical cancer.

FIRM-ACT (http://www.firm-act.org)

The first International Randomized trial in locally advanced and Metastatic Adrenocortical Carcinoma Treatment (FIRM-ACT) is a multicentre study examining the therapeuticefficacy Etoposide, Doxorubicin, Cisplatin and Mitotane vs. Streptozotocin and Mitotane for treatment of adrenal cortical cancer.

ENS@T database (http://www.ensat.org/databases.htm)

The ENS@T consortium oversees a series of registries for inputting data for patients with adrenal cortical cancer (ACC), aldosterone-producing adenomas (APA), non-aldosterone-producing adrenal cortical adenomas (NAPACA), and pheochromocytomas.

PATIENT SUPPORT GROUPS

Pheochromocytoma Support Group (http://www.pheochromocytoma.org/)

Pheochromocytoma Support Group. The US based pheochromocytoma support group is one of first supports groups established to provide information to assist patients with pheochromocytoma.

The Pheo-Para Alliance (http://www.pheo-para-alliance.org/)

The Pheo-Para Alliance — A patient-based organization established to promote support of research into pheochromocytomans and paragangliomas and assist patients and physicians cut through the maze of information related to neuroendocrine diseases so they can make informed decisions for the treatment of pheochromocytoma and paraganglioma.

Pheochromocytoma Paraganglioma Patient Initiative (http://www.pheoparatroopers.org/)

This Pheochromocytoma Paraganglioma Patient Initiative is a non-profit group supporting patients with pheochromocytomas and paragangliomas.

VHL FamilyAlliance (http://www.vhl.org/)

The VHL FamilyAlliance provides information for families and physicians about von Hippel-Lindau syndrome. International VHL Support Organizations are established on five continents

TNational Adrenal Diseases Foundation (http://www.nadf.us/index.htm)

The National Adrenal Diseases Foundation is a US-based patient organization mainly dedicated to support people with Addison’s disease, other forms of adrenal insufficiency, and also Cushing’s syndrome.

AMEND (http://www.amend.org.uk)

The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is an international patient group supporting and informing anyone affected by or interested in multiple endocrine neoplasia disorders and their associated endocrine growths, which include adrenal tumors.

Medizinischer Informationsdienst zur Nebenniere (http://www.nebenniere.de/)

Medizinischer Informationsdienst zur Nebenniere für Ärzte und Patienten - German association established to support patients affected by adrenal cancer.

Surrenales (http://www.surrenales.com/)

French association established to support patients affected by adrenal cancer.

Adrenal Hyperplasia Network (http://www.ahn.org.uk/)

United Kingdom based group to provide support for all ages of individuals with Congenital Adrenal Hyperplasia (CAH).