Survival FAQ

How to submit a case of survival of a near-sudden death by an athlete:

Thank you for choosing to participate in the National Registry of Sudden Death in Athletes. Before you can submit a case electronically to us, please register to become our system’s user. We will ask your geographical location (county and state) and your contact information. We may need to contact you for additional information after receiving a case. To register, please click here. After you register, log in with your created username and password to submit a case. If you return to submit another case, our system will remember your personal registration profile and your contact information. Please do not submit “test” cases to verify transmission of information. You will receive an e-mail from The Registry notifying you that the case has been received. If you encounter technical difficulties in the process of submission, please e-mail us.

What types of cases are we interested in?

Sometimes the rapid and efficient use of cardiopulmonary resuscitation (CPR), an automated external defibrillator (AED), interventions of emergency medical personnel, hospital treatment or all of the above resuscitates an athlete from a life-threatening event. We are interested in cases of athletes that survived such events (up to 40 years of age). The information on athletes that survived a near-sudden death event is an important part of The Registry. If you are aware of such a case, please click here to submit the information about it.

Is submission of a case over the Internet secure?

Transmission of information over the Internet into the database of the National Registry of Sudden Death in Athletes is secured by VeriSign SSL certificate. VeriSign is a system currently used for secure online transactions with authentication and encryption. For example, VeriSign system is used for transmission of billing, shipping and credit card information when making online purchases. Transmission of information to The Registry is done via a secure site. The information is encrypted before transmission. The database of all the submitted cases is designed similarly to a virtual data repository where the case information, once submitted, cannot be retrieved by outside users. If you discovered an error in the data you had submitted, please e-mail us (e-mail page opens once the user clicks). In compliance with standards set by HIPAA, the names, addresses or Social Security numbers of athletes that survived a near-sudden death episode are not included into the settings of online case submission.

Will case information be shared with outside parties?

Information on athletes that survived a near-sudden death event obtained via this website and all subsequent records pertaining to each case will be kept in confidentiality and will not be shared with medical professionals Medical Examiners and Deputy County Coroners, media representatives or be published in a manner that allows identification of an athlete. Where appropriate, the staff of The Registry will use required documentation to obtain pertinent medical records according to procedures set by offices that hold such information. However, as a part of routine oversight of the research process, the Institutional Review Board of Abbott Northwestern Hospital, Department of Health and Human Services, and Food and Drug Administration officials may request inspection of files of any research study. In such cases, appropriate procedures to maintain confidentiality of records will be followed.

What will happen after the case is received?

After we receive a case reporting survival of a near-sudden death in an athlete, the information will be reviewed by our staff members for eligibility for inclusion into The Registry. We may contact you for more information or to discuss details of the case. Periodic reports of the status of the Registry will be posted on the website.

If you have any other questions, please e-mail us.