New Coalition Launches Multi-Faceted Campaign to Maximize Impact of New Aortic Disease Diagnosis and Treatment Guidelines from American Heart Association, American College of Cardiology and Nine Other Professional Organizations
TAD Coalition Announces “Ritter Rules” to Heighten Awareness of Risk Factors, Symptoms, Urgency and Diagnosis of Aortic Dissection
EDNF, one of the first of the TAD Coalition’s founding members, reports on more than a year’s work
PORT WASHINGTON, NY (March 16, 2010) — Death from aortic dissection. It happens to the famous — actor John Ritter; RENT composer and lyricist Jonathan Larson; U.S. Olympic volleyball star Flo Hyman — and to the not famous — Tyler Kahle, 19, a loving son and brother; Paul Marks, 31, a loving husband and father; Allison Dunvegan Reed, 23, a loving daughter.
Now, as the country’s leading medical associations unveil diagnosis and treatment guidelines for thoracic aortic disease1, the recently established Thoracic Aortic Disease (TAD) Coalition is launching a multi-faceted public and medical awareness campaign to maximize the impact of the guidelines and reduce the number of deaths from aortic dissection and rupture.
Today, the Coalition announced the creation of “Ritter Rules,” named to honor John Ritter. The purpose of Ritter Rules is to help raise awareness among the public about aortic dissection so they can reduce their risk of the same kind of tragedy that took the life of the beloved actor. Ritter Rules are not a part of the American Heart Association/American College of Cardiology guidelines, but rather an information tool the Coalition developed for the public.
“No one has to die or lose a loved one to aortic disease. Ritter Rules have been created as a tribute to John. His death brought renewed focus and a heightened awareness to the tragedy of aortic disease. With Ritter Rules, people at risk will be informed about their health and be able to advocate for their families and themselves,” said Amy Yasbeck, Ritter’s widow and founder of The John Ritter Foundation for Aortic Health.
Ritter Rules can be found on the TAD Coalition’s new website, www.TADCoalition.org. In addition, people can read basic information about aortic disease, learn about risk factors, read profiles of people who have suffered from aortic dissection, and find links to a wealth of resources to find out more. A link to the AHA/ACC guidelines is also available on the website.
The TAD Coalition, which was convened specifically to promote the new guidelines and help assure that people with aortic disease can get the highest quality of patient care, has three primary goals:
- Increase public awareness of both genetic and environmental factors that put people at risk of thoracic aortic aneurysms and acute aortic dissections
- Provide educational materials concerning the symptoms, clinical evaluation and medical management of thoracic aortic disease
- Improve the diagnosis and treatment of acute aortic dissections in the hospital emergency department
“The TAD Coalition is playing a critical role in helping to maximize the impact of the new thoracic aortic disease diagnosis and management guidelines,” said Loren Hiratzka, MD, who chaired the writing committee for the American College of Cardiology and the American Heart Association. “While these new guidelines will inform and update the medical community, the TAD Coalition will inform the public of risk factors and symptoms for these aortic diseases. Together, we hope there will be better outcomes and, certainly, a reduction in the number of deaths from aortic dissection and rupture due to earlier diagnosis and improved medical management.”
Members of the TAD Coalition include the Ehlers-Danlos National Foundation, GenTAC (Registry for Genetically Triggered Aortic Aneurysm and Dissection), International Registry of Acute Aortic Dissection (IRAD), John Ritter Foundation for Aortic Health, Loeys-Dietz Syndrome Foundation, National Marfan Foundation, Nebraska Methodist Health System and the Specialized Center of Clinically Oriented Research (SCCOR) on Thoracic Aortic Aneurysms and Dissections. The American Heart Association and the American College of Cardiology have partnered with the TAD Coalition to promote awareness and adoption of the new guidelines.
Critical Issues in Thoracic Aortic Disease
“We have been concerned for a long time about the frequency of deaths due to undiagnosed aortic disease leading to aortic dissections,” said Carolyn Levering, President and CEO of the National Marfan Foundation, which convened the TAD Coalition. “Now we are able to combine our efforts with those of other like-minded organizations, and with the backing of the most well-respected medical groups, bring extensive awareness of this condition to the general public and reinforce among the medical community the best diagnosis and treatment practices for thoracic aortic aneurysms and dissections. Together, we hope to prevent tragedy and loss.”
The critical issues in diagnosis and treating aortic disease, as outlined in the guidelines, include:
- Thoracic aortic diseases often have no symptoms and are not easily detectable until an acute and often catastrophic complication occurs.
- Only with specific imaging techniques can aortic disease be identified before a tear or rupture, yet some of the imaging techniques pose their own challenges, ranging from potential health risks to costs, which are not always covered for asymptomatic patients, even if they are deemed high risk.
- The urgency of treating stable, high risk patients, despite being asymptomatic, because the surgery has better results before an acute or catastrophic dissection or rupture occurs.
- Patients who are experiencing an aortic tear or rupture may have atypical symptoms, thus delaying the immediate care they need.
- There is a growing body of evidence that genetic changes or mutations predispose some people to aortic diseases. Therefore, identification of the genetic alterations leading to these aortic diseases has the potential for early identification of individuals at risk. Understanding the molecular basis may lead to targeted medical therapy to then treat the disease.
- More research is needed on aortic disease, its various causes and potential treatments.
The primary risk factors for thoracic aortic disease are:
- Genetic syndromes, such as Marfan syndrome, Loeys-Dietz syndrome, Turner syndrome and vascular Ehlers-Danlos syndrome.
- Family history of thoracic aortic aneurysm and dissections, in which there is an inherited predisposition for aortic disease but the gene defect does not cause a specific syndrome. The genes that lead to non-syndromic forms of aortic aneurysm and dissections are in the early stages of identification.
Other cardiovascular conditions associated with thoracic aortic aneurysm and dissection include bicuspid aortic valve and associated congenital variants in adults, and inflammatory diseases, such as Takayasu’s arteritis and Behçet’s disease.
Many people do not know that they have a genetic predisposition or a cardiac abnormality that would put them at an increased risk for thoracic aortic disease.
In addition, there are a number of conditions associated with increased aortic wall stress than can lead to an aortic dissection. These are:
- Hypertension, especially if it is uncontrolled
- Pheochromocytoma (a rare tumor of the adrenal gland)
- Cocaine or other stimulant use
- Weight lifting
- Deceleration or torsional (twisting) injury (motor vehicle accident, fall)
- Coarctation of the aorta (narrowing of the aorta)
For more information about thoracic aortic disease, please visit the TAD Coalition at www.TADCoalition.org.
1Hiratzka LF, Bakris GL, Beckman JA, Bersin RM, Carr VF, Casey DE Jr, Eagle KA, Hermann LK, Isselbacher EM, Kazerooni EA, Kouchoukos NT, Lytle BW, Milewicz DM, Reich DL, Sen S, Shinn JA, Svensson LG, Williams DM. 2010 ACCF/AHA/AATS/ACR/ASA/SCA/SCAI/SIR/STS/SVM Guidelines for the diagnosis and management of patients with thoracic aortic disease: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines, American Association for Thoracic Surgery, American College of Radiology, American Stroke Association, Society of Cardiovascular Anesthesiologists, Society for Cardiovascular Angiography and Interventions, Society of Interventional Radiology, Society of Thoracic Surgeons, and Society for Vascular Medicine. Circulation 2010: published online before print March 16, 2010, 10.1161/CIR.0b013e3181d4739e.
TAD Coalition Founding Members
Ehlers-Danlos National Foundation
GenTAC (National Registry for Genetically Triggered Aortic Aneurysms and Cardiovascular Conditions)
International Registry of Acute Aortic Dissection (IRAD)
John Ritter Foundation for Aortic Health
Loeys-Dietz Syndrome Foundation
National Marfan Foundation
Nebraska Methodist Health System
Specialized Center of Clinically Oriented Research (SCCOR) on Thoracic Aortic Aneurysms and Dissections
Kim Eagle, MD
Luke Herman, MD
Loren Hiratzka, MD
Debra Kahle McMillan
Dianna Milewicz, MD, PhD