National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions
This trial has been completed.
|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||3706 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). 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/.
|United States||No locations recruiting|
|Other Countries||No locations recruiting|
|Honolulu, HI||Queens Medical Center||completed|
|Baltimore, MD||Johns Hopkins University||completed|
|New York, NY||The New York Presbyterian Hospital-Weill Cornell Medical Center||completed|
|Portland, OR||Oregon Health & Science University||completed|
|Philadelphia, PA||University of Pennsylvania School of Medicine||completed|
|Houston, TX||Baylor College of Medicine||completed|
|Houston, TX||University of Texas Medical School at Houston||completed|
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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