First Year Data from the SCA Survivor Registry,™ An Initiative of the Sudden Cardiac Arrest Foundation
May 15, 2008 – PITTSBURGH – One year ago, the Sudden Cardiac Arrest Foundation launched the SCA Survivor Registry™, the nation’s first online registry for people who suffered sudden cardiac arrest (SCA)—and lived to tell about it. Information submitted by 171 registrants offers a glimpse into the small community of rare individuals who beat the odds and survived this national killer.
A review of information about survivors in the registry, released at Heart Rhythm 2008 in San Francisco, shows:
- Two-thirds are male.
- One-third are 40 years old or younger.
- Most had no prior history of a heart condition.
- Most received cardiopulmonary resuscitation (CPR) and were treated with a defibrillator.
- Few were treated with mild therapeutic hypothermia (state-of-the-art treatment recommended for survivors to preserve brain function).
- Most now have implantable cardioverter defibrillators (ICDs).
- Most say they have returned to their previous level of functioning or to their previous level of functioning, with some limitations.
The registry also enables survivors to share their insights in narrative form, providing important qualitative information. A common theme is a deeper appreciation for the opportunity for a second chance at life.
Kristin Hamelin, 38, of Edmond, Okla., who survived SCA in March 2007 says, “It has completely changed our lives. Nothing is taken for granted. We are on a personal crusade to inform everyone we meet about the importance of learning CPR and about AEDs.”
Jerry Vauk, also 38, of Austin, Tex., who survived SCA in March 2008, put it this way: “I cherish the fact that I’m here for my kids and did not leave them with the tragedy of losing a parent at a young age. Perhaps that is what has changed from this event—a renewed sense of responsibility and appreciation for the value of every moment.”
Clearly there are limits to interpretation of quantitative data. Registration is voluntary, the sample is self-selected, participants are comfortable with Internet use, and information is either self-reported or, on occasion, reported by a family member. In addition, some survivors are not sure what treatments they received and did not complete all data fields.
As the registry begins to grow, however, trend analysis could yield important information about key characteristics of survivors and interventions that save lives.
Keith Lurie, MD, an electrophysiologist from Minneapolis, Minn., who serves as an adviser to the SCA Foundation, has high praise for the registry.“The Registry is terrific: As we change the way CPR is performed and add new techniques and technologies to improve survival rates, the registry provides a critical means to follow our progress and celebrate our saves. By keeping track of the survivors and telling their stories, more and more people will realize there has been tremendous progress in the treatment of the nation’s #1 killer,” he said.
In the coming year, the Foundation will be working with emergency medical services (EMS) leaders, cardiologists and electrophysiologists to promote the registry, said Mary Newman, SCA Foundation executive director. “Survivors who participate in the registry are just happy to be alive and want to help others get a second chance.”
Call to Action for Physicians:
Do you care for people who are sudden cardiac arrest survivors? Encourage them to visit www.sca-aware.org, join the SCA Survivor Registry™, and share their experiences and insights.
Call to Action for the Public:
Do you know anyone who has survived SCA and would like to help others survive? Encourage him/her to visit www.sca-aware.org, join the SCA Survivor Registry™, and share his/her experiences and insights.
About Sudden Cardiac Arrest
Sudden cardiac arrest (SCA) typically results from an abnormal heart rhythm. When SCA occurs, the heart stops beating altogether. As a result, blood no longer is pumped throughout the body, including the brain. The SCA victim is never awake and needs immediate CPR and treatment with a defibrillator. If nothing is done, the victim will die within minutes. About 250,000 people suffer SCA each year in the U.S. On average, 6-7 percent (~15,000 to 17,500) survive.
About the SCA Survivor Registry
The SCA Survivor Registry™ is an initiative of the SCA Foundation (www.sca-aware.org). The registry gives SCA survivors and their families the opportunity to find others who have been through similar life-changing events, share their experiences and insights, and help one another in the healing process. It also fosters research and awareness initiatives designed to improve survival rates. By collecting information such as the location of arrest, types of interventions and outcomes, the registry will help identify variables and trends related to SCA survival. Survivors who join the registry can opt to participate in survey research and efforts to increase public awareness, such as media interviews and community outreach.