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Hereditary Paraganglioma: Evaluation of Screening Methods to Detect Tumors in SDH Positive Carriers

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT00188019
Recruitment Status : Completed
First Posted : September 16, 2005
Last Update Posted : July 23, 2015
Assistance Publique - Hôpitaux de Paris
Information provided by (Responsible Party):
University Hospital, Angers

Brief Summary:
Hereditary paraganglioma -due to SDH (SDHD, SDHB, SDHC) germline mutations- causes paragangliomas and pheochromocytomas. Presymptomatic genetic testing should be offered to all first-degree relatives if an SDH mutation is detected in an index case with paraganglioma or pheochromocytoma. The main objective of our national clinical research project is to test different screening methods to detect presymptomatic tumors in order to establish guidelines for the work-up and the follow-up of SDH mutation carriers.

Condition or disease Intervention/treatment
Paraganglioma Pheochromocytoma Procedure: diagnosis methods

Study Type : Interventional  (Clinical Trial)
Actual Enrollment : 248 participants
Allocation: Non-Randomized
Intervention Model: Single Group Assignment
Masking: None (Open Label)
Primary Purpose: Diagnostic
Official Title: Evaluation Des méthodes de dépistage du Paragangliome héréditaire Chez Les Sujets prédisposés génétiquement
Study Start Date : November 2005
Primary Completion Date : November 2013
Study Completion Date : November 2013

Information from the National Library of Medicine

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Ages Eligible for Study:   6 Years and older   (Child, Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Inclusion Criteria: identification of an SDH (SDHD, SDHD, SDHC) germline mutation

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT00188019

Européen Georges Pompidou Hospital
Paris, France, 75015
Sponsors and Collaborators
University Hospital, Angers
Assistance Publique - Hôpitaux de Paris
Principal Investigator: Vincent Rohmer, MD University Angers Hospital
Principal Investigator: Anne-Paule Gimenez-Roqueplo, MD, PhD Paris-Descartes University, Européen Georges Pompidou Hospital, Assistance Publique des Hôpitaux de Paris

Responsible Party: University Hospital, Angers Identifier: NCT00188019     History of Changes
Other Study ID Numbers: PHRC 04-01
First Posted: September 16, 2005    Key Record Dates
Last Update Posted: July 23, 2015
Last Verified: July 2015

Additional relevant MeSH terms:
Carotid Body Tumor
Neuroendocrine Tumors
Neuroectodermal Tumors
Neoplasms, Germ Cell and Embryonal
Neoplasms by Histologic Type
Neoplasms, Nerve Tissue
Paraganglioma, Extra-Adrenal