MDCH - Sudden Cardiac Death of the Young (SCDY) Surveillance and Prevention Project

Sudden cardiac death claims the lives of more than 300 Michigan children and young adults between the ages of 1-39 years annually. These deaths are a tremendous loss not only for families, but for entire communities. Even more disheartening is that many of these deaths could be prevented through screening, detection, and treatment. SCDY victims are too young to die-and every life lost is one too many. Therefore, working together with a motivated group of experts and advocates, the MDCH Genomics Program initiated a surveillance system to further assess the impact of SCDY and identify action steps for prevention.

Quick Links

Radio announcement: Michigan Student Athlete Cardiac Awareness Month - April, 2013 04-29-13 (audio)
Too Young to Die - An Update on the Impact of Sudden Cardiac Death of the Young in Michigan 1999 - 2011 06/19/12
MHSAA Benchmarks (04-27-12)
As fall sports start, heart health awareness high - Holland Sentinel (08/05/11)
MHSAA Student-Athlete Physical Exam - Medical History Form (05/10/11)
Detroit Free Press: Heart problems are a silent killer of children (10/13/10)
Detroit Free Press: Doctors look to change how they get student info (10/13/10)
UM Michigan Today: Sudden death for young athletes often tied to inherited heart condition (10/14/10)
SCDY Report: Too Young to Die- Impact of Sudden Cardiac Death of the Young in Michigan, 1999-2008

Events

Hometown Health Heroes

April 17, 2013
Congratulations to the Kimberly Anne Gillary Foundation (Troy), Wes Leonard Heart Team (Fennville), and KAYLA Foundation (Ypsilanti) for being honored as 2013 Hometown Health Heroes during Michigan Public Health Week. They've assisted schools by donating automated external defribrillators (AEDs), providing AED training, and promoting CPR/AED drills to prevent deaths due to sudden cardiac arrest. To date, over 600 schools have received AEDs and training.

May 9-10, 2013
A pediatric conference entitled, "Partners in Pediatric Care", will be hosted by University of Michigan C.S. Mott Children's Hospital Department of Pediatrics and Congenital Heart Center at the Grand Traverse Resort, Traverse City, MI. For more information, see www.mottchildren.org/cme.

Surveillance

Multiple data sources are used to gather information about the burden, impact and causes of SCDY in Michigan. View the epidemiology overview, or summaries of what has been found from these data sources.

SCDY: Epidemiology Presentation
Beth Anderson, MPH, Genomics Epidemiologist
Division of Genomics, Perinatal Health and Chronic Disease Epidemiology
SCDY Mortality Data based on death certificate reporting
Michigan Behavioral Risk Factor Survey (MiBRFS) is a population-based telephone survey that was used to estimate how many Michigan residents have a family history of SCDY. Family history is the greatest risk factor for SCDY. View MIBRFS SCDY Family History Data
Mortality Case Reviews were conducted between 2006-2008. A multidisciplinary panel of experts conducted a detailed review of autopsy reports, medical records and information from next-of-kin interviews.

Data to Action

After reviewing de-identified case summaries, the expert panel recommended patient-, provider-, and system-level changes to prevent future deaths. MDCH staff continues to work with multiple partners including academia, health care delivery systems, industry, communities, and families to accomplish these changes. More than 25 action steps have been identified and grouped into five areas: pre-participation sports screening; provider education and public awareness; public awareness of cardiac symptoms and CPR/AED training; emergency response protocols; and medical examiner protocols.

Provider Education and Public Awareness of SCDY Risk Factors
Sudden Cardiac Death of the Young video Greg Holzman, MD, MPH Family Physician and Chief Medical Executive, Michigan Department of Community Health provides an overview featuring two family stories	Identifying Genetic Risk in Surviving Family Members Angela Trepanier MS, CGC Director, Genetic Counseling Program and Asst. Professor, Clinical Center for Molecular Medicine and Genetics Wayne State University
Hypertrophic Cardiomyopathy Sharlene Day MD Director, Hypertrophic Cardiomyopathy Clinic Assistant Professor of Cardiovascular Medicine University of Michigan	SCDY: Recognition, Screening and Evaluation Richard Humes MD Director, Division of Cardiology, Children's Hospital of Michigan Professor of Pediatrics, Wayne State University
Identification and Treatment of Sudden Death Conditions in Young Patients David Bradley MD Director, Pediatric Heart Rhythm Service, CS Mott Children's Hospital Associate Professor, Department of Pediatrics and Communicable Diseases University of Michigan	Sudden Cardiac Arrest Videoseries Lisa Salberg, founder and president of Hypertrophic Cardiomyopathy Association Darryl Elmouchi, M.D., Medical Director of Cardiac Electrophysiology at the Frederick Meijer Heart and Vascular Institute, Spectrum Health Center Sharlene Day, M.D., Director, Hypertrophic Cardiomyopathy Program, University of Michigan Cardiovascular Center Mark Russell, M.D., and Monica Goble, M.D., Pediatric Cardiologists at University of Michigan
Public Awareness of Cardiac Symptoms and CPR/AED Training
April 2011: Michigan Student Athlete Cardiac Awareness Month
Medical Examiner Protocols
SCDY: The Forensic Pathologist's Perspective Stephen Cohle MD Forensic Pathologist and Chief Medical Examiner, Kent County, MI

Michigan Links

American Heart Association, Midwest Affiliate
Child Death Review Factsheet
MDCH Cardiovascular Health, Nutrition and Physical Activity
The KAYLA Foundation
The Kimberly Anne Gillary Foundation
U-M, C.S. Mott Children's Hospital Sudden Cardiac Arrest Program
U-M Hypertrophic Cardiomyopathy Clinic
Wes Leonard Heart Team

National Links

Adult Congenital Heart Association
Cardiovascular Screening of Adolescent Athletes
Heart Rhythm Foundation
Heart Rhythm Society
Hypertrophic Cardiomyopathy Association
Mended Hearts, Inc.
NHLBI Working Group- Screening for Sudden Cardiac Death
Project Adam
Parent Heart Watch
Recommendations Related to Preparticipation Screening for Cardiovascular Abnormalities: 2007 Update
SADS Foundation
Screening for SCDY: Report from a NHLBI Working Group
Sudden Cardiac Arrest Association
Sudden Cardiac Arrest Foundation
Surviving Sudden Cardiac Arrest

For more information about SCDY or to become involved with prevention of SCDY in Michigan, please call 1- 866-852-1247 or email genetics@michigan.gov

Return to main genomics page

Updated 04/2013

Michigan's SCDY Surveillance Project was supported in part by a cooperative agreement from the Centers for Disease Control and Prevention, National Office of Public Health Genomics, 2004-09.