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National and International Registries


GenTAC:
National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions

GenTAC is a national registry of patients with genetic conditions that may be related to thoracic aortic aneurysms. The information collected through the registry will help doctors and researchers better understand the link between genes and aortic aneurysms and heart disease. GenTAC will also enable research to determine the best ways to manage the complications of cardiovascular disease that can arise from some genetic disorders. Better understanding and more research will lead to better treatment. Samples and data are made available to qualified investigators to enable research to determine best medical practices and to advance the clinical management of genetic thoracic aortic aneurysms, and other cardiovascular complications. The registry is sponsored by the National Heart, Lung, and Blood Institute and the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

How to Enroll: Please contact Tamera Means, 215-662-4740
GenTAC Sites »


IRAD:
International Registry of Acute Aortic Dissections

IRAD is a consortium of research centers that are evaluating the current management and outcomes of acute aortic dissection. It was established in 1996, and currently has 24 large referral centers in 12 countries participating in the registry. The University of Pennsylvania is participating in IRAD. This registry enrolls people who are unfortunate to have suffered a sudden tear in the wall of their aorta. Everything from dates and times of symptom onset, presentation, diagnosis, hemodynamic signs of aortic dissection, initial and chronic medical therapy, diagnostic imaging chosen, and surgical and medical management is being studied. Dozens of important research papers have been published based on data accumulated by IRAD.

How to Enroll: Please email Lisa Walsh
IRAD Sites »

Penn Investigators for GenTac and IRAD:

Joseph E. Bavaria, MD, Professor of Surgery and the Director of the Thoracic Aortic Surgery Program. His clinical interests involve complex aortic diseases, cardiopulmonary transplantation, and cardiac valve surgery. Dr. Bavaria has published extensively on issues regarding thoracic aortic surgery, lung transplantation, and circulation management for complex thoracic aortic reconstruction.

Reed Pyeritz, MD, PhD, Director of the Penn Center for Integration of Genetic and Healthcare Technologies (Penn CIGHT). Dr. Pyeritz has long been recognized as an international authority on the genetics of cardiovascular disorders, especially the Marfan syndrome and hereditary hemorrhagic telangiectasia.