The National Registry of Sudden Death in Young Athletes

• Why Is The Registry Necessary?
• How Does The Registry Work?
• How Is the Information Used by the Researchers?
• Partners of The Registry
• Sponsors of The Registry
• How to Help Researchers

Why Is The Registry Necessary?

The Minneapolis Heart Institute Foundation has generated and maintained a unique registry of cases comprised of young trained athletes who have died suddenly. Dr. Barry J. Maron, MD, Director of the Hypertrophic Cardiomypathy Center at the Minneapolis Heart Institute Foundation and a senior investigator at MHIF, has been collecting information regarding cases of sudden death in athletes that appeared in the media since 1985. This process allowed us to accumulate information on over 600 sudden deaths in young athletes that participated in competitive sports. Most of these deaths were documented at autopsy to be due to a variety of cardiovascular diseases, mostly hypertrophic cardiomyopathy (HCM). These efforts have been responsible for what is currently known about sudden deaths on the athletic field.

However, any system that uses news media as a primary source can be expected to be biased to under-reporting of sudden death cases for a variety of reasons. For example, the recognition and reporting of these deaths by the media are not systematic and primarily account for elite or well-known athletes and those in high-visibility sports as well as the events that happen right on the athletic field at the time of the game thereby drawing attention of the community. The deaths of non-elite athletes are more likely to reach the public if they occur in a large metropolitan area during a competitive season. The deaths of African-American competitive athletes in many circumstances are probably less likely to achieve public recognition in the mainstream press. Therefore, absolute reliability on the data derived from the media reports may underestimate the frequency with which such events occur and may preclude from making the right interpretation of the data used to design recommendations for preparticipational screening. Medical problems outside of the area of cardiovascular disease also merit attention using a systematic approach, since sudden death in athletes has been known to occur due to non-cardiovascular causes.

Therefore, only a systematically assembled National Registry may permit us to collect data about sudden death in young athletes and lead to better understanding of the true magnitude of this problem. It is also possible that unexpected observations and potential avenues of new research will emerge from establishing this Internet-based Registry.

How Does The Registry Work?

The Registry is designed to be an online database to which medical examiners in the United States will submit relevant information regarding each case that occurred in their specific county or state. Each medical examiner or coroner, or a designated person, registers as a user of the website with his/her username and password. The log-in is done through a secure connection supported by Comodo InstantSSL technology designed for securing web sites much like the payments for the purchases made over the Internet. Then, the user completes a brief questionnaire form providing basic information about a case of sudden death. Upon the submission of the information, the scientist/coordinator in charge of The Registry receives an e-mail about the new submitted case.

Technical assistance is also available by e-mail.

It is also possible to submit alerts about the case of sudden death by anyone who is not a medical examiner. Assistance in the identification of the cases is greatly appreciated and serves an important public health purpose.
The online version of The Registry is a retrospective and a prospective study. We are interested in all cases that occur in the present and in the cases that occurred starting from January 1, 2000. We will accept alerts and information regarding cases that occurred in the past, however, it is a good idea to check with The Registry first (by e-mail) to see if we already have the case you intend to provide information about.

The Registry is a part of research efforts of the Minneapolis Heart Institute Foundation, a non-profit educational and research institution in Minneapolis, MN. Since The Registry serves an important public health purpose with a unique potential for gathering and providing the data that cannot be obtained otherwise and is performed by a non-profit organization, we ask that no reimbursement for information is asked in advance by medical examiners’ offices. Upon negotiation with the staff of The Registry, small costs for the provision of the autopsy reports may be honored by The Registry, as those reports provide essential data for The Registry. The Registry cannot make payments to individuals that submit alerts about the cases of sudden death.

How Is the Information Used by the Researchers?

The information that the researchers of The Registry gather includes age of an athlete, race, circumstances of sudden death, possible prior symptoms, relevant clinical information and the type of sport the athlete participated in. The submission of information is done through a secure system, as described above. The submission page contains pull-down menus that allow one to make accurate choices in a very short period of time. The information required to submit a case does not contain the personal identifiers of the athlete, such as name, social security number and birth date. Rather, the medical examiners or their representatives will assign their own unique identifiers to each case.

It is possible that The Registry will ask the medical examiner’s or coroner’s office for additional information, such as autopsy reports, histological slides, gross specimens, photographs, etc. In those cases, we require that the personal identifiers are either removed or blacked-out using a non-washable permanent marker to protect the privacy of the deceased. In each case of request, The Registry will send a formal Letter Of Request to the medical examiner or coroner supplemented by the additional Data Use and Disclosure Agreement undertaken by The Registry upon the receipt of the information of the deceased (required by HIPAA). These communications will be made by US Postal Service only in business-reply envelopes supplied by The Registry.

The information obtained by The Registry will be used in strictly scientific avenues and public health purposes. Details of each study of the deceased will be handled as protected health information which will not be disclosed to third-party medical or life-insurers in terms of possible familial associations of diseases. In the similar manner, The Registry cannot disclose information on the deceased to medical professionals providing care to the relatives of the deceased. In those cases, health care providers must contact the appropriate medical examiner or coroner for the release of information.

This study was approved by the Institutional Review Board of Abbott Northwestern Hospital of Minneapolis, MN.

For additional information, or if you have privacy/health information protection concerns, please contact The Registry.

Partners of The Registry

Since 1995, the researchers of the Minneapolis Heart Institute Foundation relied on the information provided by Burrelle’s Information Service, which routinely accesses 18,000 newspapers and international media sources on a daily basis. To learn more about Burrelle’s Information Service, click here.

KEN (Kids Endangered Now) Heart Foundation named after Kenneth James Derminer, a football player who was a tragic victim of a sudden death, has been our partner in recent years. Dedication, hard work, and commitment to collaboration by Ken’s mother, A. Linette Derminer, have allowed us to add many cases to The Registry and thereby increase our understanding of the causes of sudden death in athletes. To learn more about the KEN Heart Foundation, please visit the homepage.

Hypertrophic Cardiomyopathy Association (HCMA) has also been one of our partners providing alerts about the cases of sudden deaths of high school and college athletes that had hypertrophic cardiomyopathy. Driven by the outstanding efforts of Lisa Saldberg, the President of HCMA, the organization has been providing peer support to patients that are coping with hypertrophic cardiomyopathy and serving as an educational and networking resource for those patients. To learn more about HCMA, please visit the homepage.

Sponsors of The Registry

The on-line version of The Registry was made possible by grant support from the William Randolph Hearst Foundation, Point-of-Care Ultrasound, the division of Philips Medical Systems and Physio-Control division of Medtronic. The Minneapolis Heart Institute Foundation gratefully acknowledges the philanthropic support of sponsors as it dedicates research efforts towards fighting heart disease with aggressive discovery and global outreach.

How to Help Researchers

There are several ways that you can help support Sudden Death in Athletes research.

With each case alert submitted, we will have a more accurate capture of the sudden death events throughout the country. Your efforts will help save future lives. E-mail us to inquire.

Financial support of research projects in sudden death in athletes and in hypertrophic cardiomyopathy will increase our understanding of the processes that trigger sudden death and will help reduce these tragic events. It is clear that more needs to be done to increase public awareness. To inquire about submitting a one-time donation or providing a project-specific grant, please e-mail us.

For any other questions, please contact us by e-mail as well.