Multi-Center Coronary Anomalies Registry
Since 2012, the Foundation has provided co-funding for a groundbreaking multi-center registry focused on coronary anomalies. This has been the Foundation’s main funding initiative which continues through 2017.
Launched in 2009 as a collaborative effort of the Congenital Hearts Surgeons’ Society, and Drs. Julie Brothers of the Children’s Hospital of Pennsylvania and Dr. Marshall Jacobs of the Johns Hopkins Hospital, the registry is maintained under the direction of Dr. Chris Calderone at the Hospital for Sick Children data center in Toronto and has been compiling cases from over 40 leading medical institutions in North America. 2014 saw a continuation of support from the Foundation for sustaining the registry and supporting its growth.
The Foundation’s funding has also led to the successful deployment completed in 2014 of a “virtual” echocardiography lab, enabling a core group of physicians to review cases for the registry from additional medical institutions.
This “Anomalous Aortic Origin of a Coronary Heart Registry” is the first and only such registry in existence and holds promise for improving best practices for detecting and treating this rare condition. As one of the most prevalent causes of sudden cardiac arrest in children and young adults, this particular cardiac condition deserves greater focus: by pooling knowledge of what amounts to a few cases at each institution, the goal is to use this registry to advance knowledge of what remains a poorly understood health hazard. While the prospects for survival appear high if an anomalous coronary artery is properly detected, the medical community is not in agreement as to the selection of the preferred method(s) of detection and treatment. Furthermore, the long term efficacy of various treatment options has not been established. We hope that this registry helps to advance the state of knowledge and save lives.
We applaud the efforts of Drs. Brothers, Jacobs and Calderone and thank the CHSS for its critical support of this ongoing research.
Sports Cardiology Conference: American College of Cardiology
In October 2012, the American College of Cardiology held in Washington, D.C. its first symposium on Sports Cardiology. The summit was attended by over 200 physicians, nurses and other medical practitioners interested in this emerging area of sports medicine.
Michael Ludwig’s parents, Lisa and Ed, were the keynote speakers at the luncheon and shared a personal perspective on the odyssey of attempting to detect Michael’s hidden cardiac anomaly as well as offering hope toward the prospects of improved detection and treatment.
Dr. Christine Lawless was instrumental in making this conference a reality after over 2 years of planning and, together with Dr. Richard Kovacs, assembled a number of panels whose speakers provided the attendees with the most advanced understanding of the state of knowledge in this field. Based on follow up survey responses, the conference was well received.
Saving tiny Hearts Society
The Foundation has provided funding support to the Saving tiny Hearts Society, a charitable organization focused on grass roots research of congenital heart defects. Their seed funding acts as a bridge for this research to larger extramural funding from the National Institute of Health and other entities. We congratulate Saving tiny Hearts and their Medical Advisory Board for helping to advance important cardiac research and look forward to further collaboration following our support in 2013.
Conference on Non-Invasive Imaging:
Collaborating with Mount Sinai School of Medicine, on Sunday, December 4, 2011 the Foundation sponsored a seminar entitled “Non-Invasive Imaging and Sudden Cardiac Death.” Attended by nearly 200 medical professionals, the conference focused on the two leading causes of sudden cardiac arrest in the young: hypertrophic cardiomyopathy and anomalous coronary arteries (which Michael had).
The event served to heighten awareness of this public health issue by bringing together leading cardiologists to share perspectives and best practices with pediatric and adult cardiologists, sonographers and other health care professionals. We are optimistic that enhanced detection practices to prospectively identify these subtle underlying cardiac conditions will improve — and that better detection will lead to saved lives. Recent advances in non-invasive imaging hold great promise such as the 3-D echocardiography technology the Foundation co-funded at Mount Sinai Hospital (see below).
At the same time, several speakers at the symposium noted the results of various medical procedures to address these coronary defects. Their research and presentations documented how most children and young adults who have coronary anomalies prospectively identified and surgically repaired have been able enjoy relatively active life styles, which may include returning to certain sports.
As measured by content and turnout, the event (held coincidentally on the 4 year anniversary of the creation of the Michael’s Foundation) was a clear success. We thank Mount Sinai Hospital for originating the symposium concept and program and for the generous time devoted by the speakers and attendees. As a result of the conference, the Foundation may support specific ongoing and new research conducted by various presenters and others participating in the symposium.
Mount Sinai Hospital, Children’s Heart Center, Division of Pediatric Cardiology, Echocardiography:
As part of improving awareness, detection and treatment of congenital heart conditions, the Foundation made its first funding activity in the form of a donation to the Division of Pediatric Cardiology of The Mount Sinai Hospital in New York toward the purchase of state of the art, 3-D echocardiography technology.
Known also as cardiac ultrasound, echocardiography is a diagnostic tool that is especially important when screening children, since it is “non invasive” (i.e., is performed outside of the body) and has no known side effects. As described by Mount Sinai’s Children’s Heart Center, echocardiography entails “bouncing sound waves off the heart to create images that provide vital information including the heart’s size and shape, its efficiency in pumping blood, and the presence of tissue damage.”
The improved imaging and processing capability of this new cardiac ultrasound platform potentially holds great promise to better equip pediatric cardiographers with identifying congenital heart defects, such as the rare condition Michael had.
Mount Sinai Hospital installed this cutting edge technology in its Pediatric Cardiology Division in June 2009.
Proposals: The Foundation continues to welcome proposals by pediatric and adult cardiologists, angiographers, sports cardiologists, and other medical professionals from around the country to consider providing funding to support various initiatives consistent with the Foundation’s mission. In addition to continued support of Mount Sinai Hospital, these initiatives under consideration include a multicenter study / registry on congenital heart anomalies, a sports cardiology information clearinghouse, and sponsorship of charitable events on behalf of disadvantaged children.
We continue to welcome advice and ideas from medical professionals and non-professionals alike.