National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01322165

Acronym

GenTAC

Enrollment

3706

Registered

2011-03-24

Start date

2007-11-30

Completion date

2016-09-30

Last updated

2016-12-20

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Bicuspid Aortic Valve With Coarctation, Bicuspid Aortic Valve With Family History, Bicuspid Aortic Valve Without Known Family History, Ehlers-Danlos Syndrome, Familial Thoracic Aortic Aneurysm and Dissections, FBN1, TGFBR1, TGFBR2, ACTA2 or MYH11 Genetic Mutation, Loeys-Dietz Syndrome, Marfan Syndrome, Other Aneur/Diss of Thoracic Aorta Not Due to Trauma, <50yo, Other Congenital Heart Disease, Shprintzen-Goldberg Syndrome, Turner Syndrome

Keywords

Marfan syndrome, Turner syndrome, Bicuspid aortic valve, Ehlers-Danlos Syndrome, Loeys-Dietz syndrome, Aneurysm, Genetic, aortic, thoracic, mutation, dissection

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/.

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Healthy volunteers

Inclusion criteria

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.

Design outcomes

Primary

Measure	Time frame
Thoracic aortic aneurysms and dissections and their associated surgical interventions	bi-annual

Countries

United States

Outcome results