By Robert J. Myerburg, MD
Professor of Medicine and Physiology
University of Miami Miller School of Medicine
For more than 50 years, it had been suspected that certain cardiac disorders that clustered in families might have a genetic basis. Then, from the 1990’s to the present, as techniques for human genetic analysis provided the tools needed to delve into these suspicions, a great deal in information has become available on the association of specific genetic variations with clinical syndromes associated with sudden death risk. The early studies became the foundation for a more general explosion of research into the genetic basis for life-threatening heart rhythm disturbances, beginning with the genetics of long QT-Interval syndrome, and continuing to include other disorders such as hypertrophic cardiomyopathy, right ventricular dysplasia, Brugada syndrome, as well as other rare syndromes. In addition, it has also been learned that risk of sudden death in more common disorders, such as coronary artery disease and common heart muscle disorders (the non-ischemic cardiomyopathies), are also likely to be influenced by genetic variations passed in families. Finally, there is also reason to believe that the risk of being affected by common non-fatal conditions, such as atrial fibrillation, may run in some families and have a genetic basis.
Cardiac Arrhythmias Research and Education (C.A.R.E.) Foundation, Inc. is a 501(c)(3) nonprofit corporation based in Wisconsin.
Cardiac Arrhythmias Research and Education (C.A.R.E.) Foundation, Inc., is in no way affiliated with Care International.
Robert J. Myerburg, M.D.
In 1986, a small group of clinicians and scientists who shared concern about the problem of sudden cardiac death met informally to discuss the issues of the lack of public, professional, and political attention to this huge problem. It was subsequently agreed that an expanded group would meet regularly to discuss relevant topics and to take those actions which would enhance public recognition, and encourage political and scientific action. Recognition of the importance of sudden cardiac death as a public health problem had to be a prelude to finding methods of prevention.
Thus, the Coalition for the Prevention of Sudden Cardiac Death was established, without portfolio, but with a mission that was pure. Among the founding precepts was the fact that we were not tied to the complexities of other larger organizations and could focus entirely on our problem of interest.
In 1995, we were joined by Doris Goldman, who brought with her a vision. We developed a new foundation as a spin-off of the parent organization. It would be more proactive than the Coalition in fund raising for the specific purpose of research and education in cardiac arrhythmias, targeted to the purpose of prevention of sudden cardiac deaths. The Cardiac Arrhythmias Research and Education (C.A.R.E.) Foundation was born in April 1995, and began its existence with purpose and vigor.
While the Coalition and C.A.R.E. were evolving, the world of cardiac electrophysiology and clinical management of arrhythmias was rapidly changing. Under our watch, the excitement of new procedures, such as catheter ablations, validation of efficacy and refinement of implantable defibrillators, and a broadened appreciation for the epidemiological mechanisms and causes of cardiac arrhythmias, all emerged. Among the latter, the field of electrophysiological genetics was born into the realm of long QT interval syndromes and now other entities as well.
Thus, in part because of its own initiatives and in part because of the emergence of the exciting new era in basic and clinical insights into the management of life-threatening arrhythmias, C.A.R.E. became a highly relevant organization. In addition to its many contributions to the science of cardiac rhythm disorders, C.A.R.E. has played a critically important role in supporting thousands of arrhythmia patients and their families. Our efforts combined have helped to save lives.