TAAHSR – Texas Adolescent Athletic Heart Screening Registry (TAAHSR)

Championship Hearts Foundation (CHF) is sponsoring this TAAHSR Registry.  This registry is a research study that is examining heart screening results for young athletes.  CHF is providing heart screenings for students ages 14 through 18 years of age to study ways to better detect and understand risks of sudden cardiac death (SCD) from Hypertrophic Cardiomyopathy (HCM).  There will be about 10,000 participants in this study at several locations in Texas, and about 4,000 in the Austin area.

The purpose of this study is to test athletes for cardiac risk and to use the information gained to create a database known as a registry.  A registry is a collection of medical information.  By placing the information of many participants in a database, researchers may be able to increase knowledge about a condition and improve its prevention in the future.

Championship Hearts Foundation is establishing a registry of results from adolescent limited heart screenings for HCM, one cause of SCD.  Sudden cardiac death (also called sudden arrest) is death resulting from a sudden loss of heart function (when the heart stops beating suddenly – cardiac arrest).  HCM is a genetic heart condition, meaning it is easily inherited from famly members.  The lower left chamber of the heart becomes enlarged and causes the blood flow to be impaired.  These screenings will identify students potentially at risk of SCD due to HCM.

The ongoing submission of data to this registry will assist researchers with identifying possible other conditions related to SCD in young populations such as family cardiac history, gender, ethnicity, and body mass index.  The information collected in this study may provide better standards for the normal range of pediatric electrocardiogram and echocardiogram parameters.

Overall SCD is quite rare in otherwise healthy children.  Many abnormalities of the heart can potentially cause SCD.  HCM is probably the most common cause and may often be detected by echocardiogram (an ultrasound of the heart) and/or electrocardiogram (electrical tracing of the heart rhythm-ECG).  HCM causes excessive thickening of the heart muscle and can potentially lead to sudden cardiac arrest.  As a result, it increases the chance of individuals, like young athletes, dying suddenly and without warning.  Most athletes and their family members, who may also be at risk for this genetic condition, are unaware that they might be at risk until sudden cardiac arrest occurs.

Other significant heart abnormalities that may cause SCD may also be detected using and echocardiogram and ECG.  However, screening does not always detect an abnormality even when it is actually present and not all potentially fatal heart abnormalities can be detected by this screening.

Participants and legal guardians are asked to sign a consent form and complete a TAAHSR Registration/History form.  Participants are not paid to participate in this study.  Should there be a potential abnormality, the parent/guardian of record will be notified by a study team member and instructed to seek a comprehensive evaluation by a pediatric cardiologist.

A recent story published in the LA Times (Jeannine Stein, 11/23/09) suggests that comprehensive screenings could be the answer to the tragedy of a young athlete dying of an undiagnosed heart condition.  Health histories and screenings were conducted on 134 Maryland high school athletes attending the state track and field championships in 2008. 

Dr. Aurelio Pinheiro of the the Johns Hopkins School of medicine and his colleagues were specifically looking for cardiac abnormalities such as hypertrophic cardiomyopathy, a thickening of the heart muscle that makes it difficult for the heart to pump blood.

Of the 134 athletes tested (tests included an echocardiogram, an EKG, blood pressure, and health history), abnormalities of some kind were found in 36 athletes.  Of those 36, 22 were found via EKG alone and five by both tests. 

Dr. Pinheiro states that these findings argue for routine testing of athletes, suggesting that such testing should be comprehensive and not reliant on just an EKG or an echocardiogram.  

This study was presented at the American Heart Association’s annual scientific sessions conference in Orlando, Florida in November, 2009.