National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions
This trial is active, not recruiting.
|Conditions||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 dissections, shprintzen-goldberg syndrome, other aneur/diss of thoracic aorta not due to trauma, <50yo, other congenital heart disease|
|Sponsor||National Heart, Lung, and Blood Institute (NHLBI)|
|Collaborator||National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)|
|Start date||November 2007|
|End date||September 2015|
|Trial size||3800 participants|
|Trial identifier||NCT01322165, 1438, 268201000048C-5-0-1, N01HV68199-7-0-1|
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). The goal of GenTAC is to establish a registry of patients with genetic conditions that may be related to thoracic aortic aneurysms and to collect medical data and biologic samples. The samples and data will be made available to qualified investigators to enable research to determine best medical practices and to advance the clinical management of genetic thoracic aortic aneurysms, and other cardiovascular complications. Over 3600 subjects have been enrolled into the registry.
Eligible subjects must be seen in person at one of the participating locations. Contact the study coordinator at the location nearest you for more information about participation. This study does not provide genetic testing.
|United States||No locations recruiting|
|Other Countries||No locations recruiting|
|Honolulu, HI||Queens Medical Center||no longer recruiting|
|Baltimore, MD||Johns Hopkins University||no longer recruiting|
|New York, NY||The New York Presbyterian Hospital-Weill Cornell Medical Center||no longer recruiting|
|Portland, OR||Oregon Health & Science University||no longer recruiting|
|Philadelphia, PA||University of Pennsylvania School of Medicine||no longer recruiting|
|Houston, TX||Baylor College of Medicine||no longer recruiting|
|Houston, TX||University of Texas Medical School at Houston||no longer recruiting|
Thoracic aortic aneurysms and dissections and their associated surgical interventions
time frame: bi-annual
Male or female participants of any age.
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.
|Official title||National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions|
|Principal investigator||Richard Devereux, MD|
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