IGF::OT::IGF GenTAC Alliance Management Support Services

Social Solutions International, Silver Spring MD

Investigators

Abstract

The National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) Registry was established in 2006 to collect information from eligible patients with genetic conditions that predispose them for thoracic aortic aneurysms to assist physicians and researchers in understanding the link between genes, aortic aneurysms, and heart disease. The Registry includes de-identified medical data, clinical images, and biological samples of about 3,700 patients and is available for research at no cost to qualified investigators worldwide. The GenTAC Registry concluded in 2016. Several new registries formed to continue longitudinal data collection on GenTAC cohort and to enroll additional patients. The purpose of this program 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 specimens. The specimens and database are available to qualified investigators for research to advance the clinical management of genetically induced thoracic aortic aneurysms and other cardiovascular complications. Individuals with 1 of 12 conditions?including connective tissue diseases, such as Marfan, Loeys-Dietz, and Ehlers Danlos (vascular type) Syndromes, Turner Syndrome, and bicuspid aortic valve?are eligible to enroll in GenTAC. The GenTAC Alliance is a consortium that will continue to coordinate the scientific and logistical efforts among stakeholders, including the daughter registries of GenTAC, patient advocacy organizations, and patient representatives.