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

This study has been completed.
Assistance Publique - Hôpitaux de Paris
Information provided by (Responsible Party):
University Hospital, Angers Identifier:
First received: September 12, 2005
Last updated: July 22, 2015
Last verified: July 2015
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 Intervention
Paraganglioma Pheochromocytoma Procedure: diagnosis methods

Study Type: Interventional
Study Design: 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

Resource links provided by NLM:

Further study details as provided by University Hospital, Angers:

Enrollment: 248
Study Start Date: November 2005
Study Completion Date: November 2013
Primary Completion Date: November 2013 (Final data collection date for primary outcome measure)

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
  Contacts and Locations
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Please refer to this study by its identifier: 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
  More Information

Responsible Party: University Hospital, Angers Identifier: NCT00188019     History of Changes
Other Study ID Numbers: PHRC 04-01
Study First Received: September 12, 2005
Last Updated: July 22, 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 processed this record on September 21, 2017