National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (NCT01322165) | Clinical Trial Compass
CompletedNot Applicable
National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions
United States3,706 participantsStarted 2007-11
Plain-language 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/.
Who can participate
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
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.
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Thoracic aortic aneurysms and dissections and their associated surgical interventions
Timeframe: bi-annual
Trial details
NCT IDNCT01322165
SponsorNational Heart, Lung, and Blood Institute (NHLBI)