National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions

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/.

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Key information

Conditions

Marfan Syndrome Abnormalities, Multiple Aneurysm Aortic Aneurysm Aortic Aneurysm, Familial Thoracic 1 Aortic Diseases Aortic Valve Disease Bicuspid Aortic Valve Disease Bicuspid Aortic Valve With Coarctation Bicuspid Aortic Valve With Family History Bicuspid Aortic Valve Without Known Family History Bone Diseases Bone Diseases, Developmental Cardiovascular Abnormalities Cardiovascular Diseases Chromosome Disorders Collagen Diseases Colorectal Cancer, Hereditary Nonpolyposis, Type 6 Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Connective Tissue Diseases Craniofacial Abnormalities Disorders of Sex Development Ehlers-Danlos Syndrome Endocrine System Diseases FBN1, TGFBR1, TGFBR2, ACTA2 or MYH11 Genetic Mutation Familial Thoracic Aortic Aneurysm and Dissections Female Urogenital Diseases Female Urogenital Diseases and Pregnancy Complications Genetic Diseases, Inborn Gonadal Disorders Gonadal Dysgenesis Heart Defects, Congenital Heart Diseases Heart Valve Diseases Hematologic Diseases Hemic and Lymphatic Diseases Hemorrhagic Disorders Hemostatic Disorders Loeys-Dietz Syndrome Male Urogenital Diseases Musculoskeletal Abnormalities Musculoskeletal Diseases Other Aneur/Diss of Thoracic Aorta Not Due to Trauma, <50yo Other Congenital Heart Disease Sex Chromosome Disorders Sex Chromosome Disorders of Sex Development Shprintzen Golberg craniosynostosis Shprintzen-Goldberg Syndrome Skin Abnormalities Skin Diseases Skin Diseases, Genetic Skin and Connective Tissue Diseases Turner Syndrome Urogenital Abnormalities Urogenital Diseases Vascular Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

Queens Medical Center, Honolulu, Hawaii, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Eligible subjects must have one of the conditions listed below and be enrolled in-person at one of the participating clinical centers.Contact the study coordinator at the location nearest you for more information about participation.

Marfan syndrome
Turner syndrome
Ehlers-Danlos syndrome
Loeys-Dietz syndrome
FBN1, TGFBR1, TGFBR2, ACTA2 or MYH11 genetic mutation
Bicuspid aortic valve without known family history
Bicuspid aortic valve with family history
Bicuspid aortic valve with coarctation
Familial Thoracic Aortic Aneurysm and DissectionsYes
Shprintzen-Goldberg syndrome
Other aneurysms and dissections of the thoracic aorta not due to trauma, <50yo
Other congenital heart disease (e.g., Tetralogy of Fallot, coarctation)

Exclusion criteria

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

Treatment and study plan

Primary outcomes

Thoracic aortic aneurysms and dissections and their associated surgical interventions

Time frame: bi-annual

Sponsors and collaborators

Lead sponsor

National Heart, Lung, and Blood Institute (NHLBI)

Nih

Collaborators

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

Registry information

Acronym: GenTAC

Important dates

Study start: 2007
Primary completion: 2015
Study completion: 2016
First posted: Mar 24, 2011
Registry last updated: Dec 20, 2016

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

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