National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions

Completed

• Conditions: Bicuspid Aortic Valve With Family History; Familial Thoracic Aortic Aneurysm and Dissections; Other Congenital Heart Disease; Marfan Syndrome; Bicuspid Aortic Valve With Coarctation; Shprintzen-Goldberg Syndrome; Turner Syndrome; Ehlers-Danlos Syndrome; Loeys-Dietz Syndrome; Bicuspid Aortic Valve Without Known Family History

• Registration Number: NCT01322165
• Lead Sponsor: National Heart, Lung, and Blood Institute (NHLBI)

Brief Summary

The National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) was initiated in 2006 by the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). GenTAC established a registry of 3706 patients with genetic conditions that may be related to thoracic aortic aneurysms and collected medical data and biologic samples. The study ended in September 2016. Data and samples are available from NHLBI and requests should be made to BioLINCC. See the NHLBI website for more information: https://www.nhlbi.nih.gov/research/resources/gentac/.

Detailed Description

Not available

Study Timeline

• Study Start: 2007-11
• Study First Submitted: 2011-03-22
• Study First Submitted QC: 2011-03-22
• Study First Posted: 2011-03-24
• Primary Completion: 2015-09
• Study Completion: 2016-09
• Status Verified: 2016-12
• Last Update Submitted: 2016-12-19
• Last Update Posted: 2016-12-20

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 3706

Inclusion Criteria

Not provided

Exclusion Criteria

• Inability of the patient, parent or guardian to give consent.
• Unwillingness to provide a blood or buccal specimen.

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Thoracic aortic aneurysms and dissections and their associated surgical interventions	bi-annual

Trial Locations

Locations (7)

Baylor College of Medicine; 🇺🇸 Houston, Texas, United States

Johns Hopkins University; 🇺🇸 Baltimore, Maryland, United States

Oregon Health & Science University; 🇺🇸 Portland, Oregon, United States

The New York Presbyterian Hospital-Weill Cornell Medical Center; 🇺🇸 New York, New York, United States

Queens Medical Center; 🇺🇸 Honolulu, Hawaii, United States

University of Pennsylvania School of Medicine; 🇺🇸 Philadelphia, Pennsylvania, United States

University of Texas Medical School at Houston; 🇺🇸 Houston, Texas, United States