National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) and GenTAC Alliance
What are the goals of the GenTAC Registry and GenTAC Alliance?
From 2006 to 2016, the NHLBI and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) co-funded the National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC). The purpose of the GenTAC Registry was to collect data and specimens from patients who had a confirmed or suspected condition that increased their chances of developing thoracic aortic aneurysms. The data and specimens help physicians and researchers clarify the link between aortic disease and and information.
By supporting the scientific community, the GenTAC Registry successfully promoted scientific collaborations and fostered research on thoracic aortic aneurysms. These collaborations resulted in publications that led to a greater understanding of the disease and improvements in patient health through better diagnosis and clinical care. Building on this success, in September 2017, the NHLBI began funding the GenTAC Alliance—a consortium of researchers, patients, professional and patient advocacy groups, and other stakeholders—that will coordinate the activities of the GenTAC Registry and other relevant registries.
The goals of the GenTAC Alliance include:
- Enlarging partnerships to include other related registries, organizations, and industry partners with similar missions
- Fostering new research collaborations that could lead to publications
- Identifying new grants for research on thoracic aortic disease
- Promoting education about genetically triggered thoracic aortic conditions
- Translating state-of-the-art scientific discoveries into educational materials that generate effective conversations between health care providers and patients
- Recruiting for clinical trials patients who have a genetic risk of developing thoracic aortic aneurysm and its complications, especially those affecting the heart and vascular systems
AT A GLANCE
- The GenTAC Registry facilitated research in the diagnosis and clinical care of people who have genetically triggered thoracic aortic aneurysm.
- The Registry enrolled over 3,600 people who had one of the 13 conditions with a genetic risk of developing thoracic aortic aneurysm and its complications.
- The Registry has over 6,000 images, 2,000 blood samples, and 3,000 DNA samples, plus cardiovascular system and affected-organ data from over 3,600 patients.
- The GenTAC Registry demonstrated the value of studying groups of participants with different genetic diseases who have similar cardiovascular outcomes.
- After the GenTAC Registry ended, the GenTAC Alliance formed to expand collaborations and promote follow-up and enrollment in relevant registries.
How did the GenTAC Registry contribute to scientific discoveries?
The GenTAC Registry established a large biospecimen inventory and clinical database of over 3,600 participants that is available at no cost to qualified investigators worldwide. The Registry held biannual scientific meetings, monitored over 2,600 patients, contributed to findings in about 30 publications, and collected over 6,000 images, 2,000 blood samples, and 3,000 DNA samples, in addition to cardiovascular or affected-organ patient data.
The Registry also contributed to improving patient health through better diagnosis. Data have indicated that many thoracic aortic aneurysms in people younger than 50 are due to mutations in the genes. By providing clinical and biological data, the GenTAC Registry is helping improve the diagnosis and clinical care of genetically triggered thoracic aortic aneurysms and their complications, especially those affecting the cardiovascular system. View our YouTube playlist, which highlights genetics, imaging, and surgery options for thoracic aortic disease and research done using GenTAC data, biospecimens, or images.
Read more about how the GenTAC Registry continues to increase knowledge about thoracic aortic disease through Aortic Summits.
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National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) and GenTAC Alliance
How can researchers access GenTAC Registry data?
The NHLBI’s Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) centralizes and integrates biospecimens and clinical data that are available to researchers online, which maximizes the value of these resources for many programs, including the GenTAC Registry. The NHLBI encourages researchers to utilize the valuable resources that have been collected in the Registry. Researchers may visit BioLINCC’s National Registry of GenTAC page to learn how to obtain GenTAC data, biospecimens, and images.
How was the GenTAC Registry conducted?
The GenTAC Registry cohort included patients who had a confirmed or suspected genetic condition that increased their risk of developing thoracic aortic aneurysm. Enrollment data were gathered from medical records or patient interviews. Electronic health records contributed to the information database, and DNA, plasma, lymphocytes, and surgical tissue were added to the Biospecimen Repository. Every two years, researchers used medical information to gather new data, and they collected new images. Images were read centrally by the Imaging Core, and diagnosis was confirmed by the Phenotyping Core. Follow-up data was collected at regular intervals for more than 2,600 patients, with the interval varying by the diagnosis.
Read more about enrollment criteria and participating centers in the GenTAC Registry.
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National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) and GenTAC Alliance
How does the GenTAC Alliance work?
The GenTAC Alliance aims to promote data sharing and research to improve outcomes for people who have thoracic aortic disease. Although the management of thoracic aortic aneurysms has improved significantly, patients with aortic dissections or tears, rupture, or other acute complications of thoracic aortic aneurysms continue to have high burden of disease. Ruptures and dissections of thoracic aortic aneurysms remain a major cause of death in this population.
The Alliance is now working to maintain and expand collaborations, provide leadership, enhance the scope of research for genetically triggered thoracic aortic conditions, promote education about these conditions, enhance patient care through education and research, recruit patients for clinical trials, and develop a pilot grant program for young investigators. The Alliance will also enhance the quality and capabilities for federal and private grant applications for these rare diseases that challenge cardiovascular medicine.
The GenTAC Alliance members will include representatives of the NHLBI, registries from the GenTAC Registry, other related registries, and patient advocacy organizations. Prospective members also include scientists, clinicians, foundations, universities, and more.