Sorry this is going to be long. But Justin has an MRI next week at Un of Penn next week and I was looking around the site to see new trials ect. I found 2 registries that I thought were pretty interesting and people from here might want to look into. First I'll paste the info from Penns site,(with links to the registry hopefully, but if the clickable links don't show you can get then from the HUP page) then a little from the main site for the registries. Beside info on enrolling, the registry sites looked to have some good information.
http://www.med.upenn.edu/cvi/clinical_registry.shtml#GenTAC
Clinical Trials
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:
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.
Here is from the 1st registry, it looks like they ARE looking for people to enroll. The 2nd registry (for disections) I haven't found IF you can sign up or if it is more a type of thing if you end up at a participating center you are/can be part of it. But if you've had a disection and are interested, you could probably contact them.
https://gentac.rti.org/Default.aspx?tabid=36
Scientists are learning more every day about how genes play a role in our health. Our genetic make-up, or DNA, can influence whether we have a higher or lower risk of certain conditions, such as heart and cardiovascular disease.
A group of patients with certain genetic conditions is currently being recruited to establish the GenTAC Registry. 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.
Connect with GenTAC and be a link to better cardiovascular health!
https://gentac.rti.org/Default.aspx?tabid=108
Who Is Eligible?
We are seeking people of all ages and ethnicities to join this important registry. Call or e-mail us to learn how to join if you or a family member has been diagnosed with any of the following conditions:
Marfan syndrome
Turner syndrome
Ehlers-Danlos syndrome
Loeys-Dietz syndrome
Shprintzen-Goldberg syndrome
Biscupid Aortic Valve
A family history of aneurysms and dissections of the aorta
Other less common conditions qualify; please call us or ask your doctor to find out if you’re eligible. For certain genetic conditions, family history and other clinical criteria may be required to participate.
https://gentac.rti.org/Default.aspx?tabid=110
How Do I Enroll?
A group of prestigious medical centers and physicians in the United States have come together to research and understand how cardiovascular disease and aneurysms affect those with genetic disorders.
Please call or e-mail the nearest medical center below to find out if you qualify. If you don’t live near any of the clinics, we may be able to make special arrangements to enroll you in GenTAC. Call the Data Coordinating Center (RTI) at 1-800-334-8571, ext. 24640, or e-mail [email protected] for more information.
(there is a list of contact info for the centers I didn't copy)
This is the 2nd one
http://www.iradonline.org/irad.html
The 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 main purpose of IRAD is to assess the etiological factors, modes of presentation, clinical features, treatment, and hospital outcomes of patients with acute aortic dissection around the world.
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.
Creation of working groups to identify new breakthroughs in diagnosis and treatment have just been developed including groups targeting: the genetic basis of aortic dissection; use of acute and chronic biomarkers; best surgical approach; best medical approach; how patients should be followed; and what is the proper role for percutaneous stent graft therapy.
The University of Michigan Health System is the Coordinating Center. IRAD currently has data on 1600 acute aortic dissection cases. IRAD is supported by grants from the University of Michigan Health System and the Varbedian Fund for Aortic Research.
For more information about IRAD, please visit http://www.med.umich.edu/cvc/research/mcorrp/mcorirad.htm.
http://www.med.upenn.edu/cvi/clinical_registry.shtml#GenTAC
Clinical Trials
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:
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.
Here is from the 1st registry, it looks like they ARE looking for people to enroll. The 2nd registry (for disections) I haven't found IF you can sign up or if it is more a type of thing if you end up at a participating center you are/can be part of it. But if you've had a disection and are interested, you could probably contact them.
https://gentac.rti.org/Default.aspx?tabid=36
Scientists are learning more every day about how genes play a role in our health. Our genetic make-up, or DNA, can influence whether we have a higher or lower risk of certain conditions, such as heart and cardiovascular disease.
A group of patients with certain genetic conditions is currently being recruited to establish the GenTAC Registry. 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.
Connect with GenTAC and be a link to better cardiovascular health!
https://gentac.rti.org/Default.aspx?tabid=108
Who Is Eligible?
We are seeking people of all ages and ethnicities to join this important registry. Call or e-mail us to learn how to join if you or a family member has been diagnosed with any of the following conditions:
Marfan syndrome
Turner syndrome
Ehlers-Danlos syndrome
Loeys-Dietz syndrome
Shprintzen-Goldberg syndrome
Biscupid Aortic Valve
A family history of aneurysms and dissections of the aorta
Other less common conditions qualify; please call us or ask your doctor to find out if you’re eligible. For certain genetic conditions, family history and other clinical criteria may be required to participate.
https://gentac.rti.org/Default.aspx?tabid=110
How Do I Enroll?
A group of prestigious medical centers and physicians in the United States have come together to research and understand how cardiovascular disease and aneurysms affect those with genetic disorders.
Please call or e-mail the nearest medical center below to find out if you qualify. If you don’t live near any of the clinics, we may be able to make special arrangements to enroll you in GenTAC. Call the Data Coordinating Center (RTI) at 1-800-334-8571, ext. 24640, or e-mail [email protected] for more information.
(there is a list of contact info for the centers I didn't copy)
This is the 2nd one
http://www.iradonline.org/irad.html
The 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 main purpose of IRAD is to assess the etiological factors, modes of presentation, clinical features, treatment, and hospital outcomes of patients with acute aortic dissection around the world.
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.
Creation of working groups to identify new breakthroughs in diagnosis and treatment have just been developed including groups targeting: the genetic basis of aortic dissection; use of acute and chronic biomarkers; best surgical approach; best medical approach; how patients should be followed; and what is the proper role for percutaneous stent graft therapy.
The University of Michigan Health System is the Coordinating Center. IRAD currently has data on 1600 acute aortic dissection cases. IRAD is supported by grants from the University of Michigan Health System and the Varbedian Fund for Aortic Research.
For more information about IRAD, please visit http://www.med.umich.edu/cvc/research/mcorrp/mcorirad.htm.
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