About the GenTAC Alliance
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Mission
The goal of the GenTAC Alliance is to continue to harness the synergy driven by the GenTAC Registry (the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions), in maintaining and enhancing collaboration of stakeholders to advance scientific discovery and clinical practice, and address patient and provider education needs regarding genetic aortic and vascular conditions.
The GenTAC Alliance is open to any type of stakeholder with an interest in genetic aortic and vascular conditions, including but not limited to researchers, patient advocacy groups, clinicians, academic institutions, professional societies, and industry organizations.
It is anticipated and hoped that the GenTAC Alliance will leverage the resources created through the initial GenTAC Registry, as well as other existing and new registries, to facilitate stakeholder collaboration on publications, foster new research collaborations, and identify and tap new resources to support grant opportunities for thoracic aortic disease.
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History
The Alliance was initiated in 2017 to harness the synergy and collaborations created by the GenTAC Registry, an initiative funded by NHLBI and NIAMS that enrolled and followed over 3,600 participants from 2006 through 2016.
In 2020, the GenTAC Alliance formally became part of The Marfan Foundation, joining the Foundation’s other divisions, The VEDS Movement and the Loeys-Dietz Syndrome Foundation. The Foundation has been a champion of the GenTAC Registry since its inception and, with the Alliance as part of its organization, has cemented its commitment to increase the impact of research on genetic aortic and vascular conditions.
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Goals of the GenTAC Alliance
- Enhance the scope of research and expand collaborations to improve clinical management of genetic aortic and vascular conditions.
- Facilitate effective coordination of the scientific efforts among stakeholders, while addressing the unique educational needs of providers, patients, and families with or at risk for genetic aortic and vascular conditions.
- Broaden partnerships to include complementary registries, professional organizations, and industry partners whose missions include improving the diagnosis and treatment of genetic aortic and vascular conditions.
- Promote the use and sharing of the resources (data, specimens, and images) generated by GenTAC and complementary registries to enable and foster new research collaborations and publications.
- Identify and tap new resources to support grant opportunities for research on genetic aortic and vascular conditions.
GenTAC Alliance Organizational Chart
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Learn about working group mandates and membership.