---
title: National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions
nct_id: NCT01322165
overall_status: COMPLETED
sponsor: National Heart, Lung, and Blood Institute (NHLBI)
study_type: OBSERVATIONAL
primary_condition: Marfan Syndrome
countries: United States
canonical_url: "https://parkinsonspathways.com/agent/trials/NCT01322165.md"
clinicaltrials_gov: "https://clinicaltrials.gov/study/NCT01322165"
ct_last_update_post_date: 2016-12-20
last_seen_at: "2026-05-12T06:31:48.085Z"
source: ClinicalTrials.gov (mirrored, no enrichment)
---
# National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions

**NCT ID:** [NCT01322165](https://clinicaltrials.gov/study/NCT01322165)

## Key Facts

- **Status:** COMPLETED
- **Study Type:** OBSERVATIONAL
- **Target Enrollment:** 3706
- **Lead Sponsor:** National Heart, Lung, and Blood Institute (NHLBI)
- **Collaborators:** National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
- **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
- **Start Date:** 2007-11
- **Completion Date:** 2016-09
- **CT.gov Last Update:** 2016-12-20

## 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/.

## Eligibility

- **Sex:** ALL
- **Healthy Volunteers:** No

```
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.
```

## Primary Outcomes

- **Thoracic aortic aneurysms and dissections and their associated surgical interventions** _(time frame: bi-annual)_

## Locations (7)

- Queens Medical Center, Honolulu, Hawaii, United States
- Johns Hopkins University, Baltimore, Maryland, United States
- The New York Presbyterian Hospital-Weill Cornell Medical Center, New York, New York, United States
- Oregon Health & Science University, Portland, Oregon, United States
- University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, United States
- Baylor College of Medicine, Houston, Texas, United States
- University of Texas Medical School at Houston, Houston, Texas, United States

## Recent Field Changes (last 30 days)

- `status.overallStatus` — added _(2026-05-12)_
- `status.primaryCompletionDate` — added _(2026-05-12)_
- `status.completionDate` — added _(2026-05-12)_
- `status.lastUpdatePostDate` — added _(2026-05-12)_
- `design.enrollmentCount` — added _(2026-05-12)_
- `eligibility.criteria` — added _(2026-05-12)_
- `eligibility.sex` — added _(2026-05-12)_
- `outcomes.primary` — added _(2026-05-12)_
- `sponsor.lead` — added _(2026-05-12)_
- `sponsor.collaborators` — added _(2026-05-12)_
- `results.hasResults` — added _(2026-05-12)_
- `locations.queens medical center|honolulu|hawaii|united states` — added _(2026-05-12)_
- `locations.johns hopkins university|baltimore|maryland|united states` — added _(2026-05-12)_
- `locations.the new york presbyterian hospital-weill cornell medical center|new york|new york|united states` — added _(2026-05-12)_
- `locations.oregon health & science university|portland|oregon|united states` — added _(2026-05-12)_
- `locations.university of pennsylvania school of medicine|philadelphia|pennsylvania|united states` — added _(2026-05-12)_
- `locations.baylor college of medicine|houston|texas|united states` — added _(2026-05-12)_
- `locations.university of texas medical school at houston|houston|texas|united states` — added _(2026-05-12)_

---

*Canonical: https://parkinsonspathways.com/agent/trials/NCT01322165.md*  
*Source data (authoritative): https://clinicaltrials.gov/study/NCT01322165*  
*This page is a raw mirror with no AI summary, no editorial enrichment, and no Parkinson's-specific filtering.*