SUDDEN DEATH IN THE YOUNG REGISTRY

The precise incidence of sudden cardiac arrest (SCA) in youth is presently unknown due to the lack of a mandatory and systematic national registry Various studies have been conducted on the incidence of SCA in youth, however, they have been based on different criteria and therefore produced varying results.

Parent Heart Watch (PHW) with its members from across the country advocated for a consolidated effort to establish the incidence of sudden death in the young in the U.S., with the ultimate outcome of developing prevention protocol and standardizing these strategies in youth healthcare.

Our efforts were instrumental in launching the Sudden Death in the Young Registry (SDY)—the first federal effort to document and evaluate SCA in youth. PHW is one of only 11 members on its national advisory committee and regularly presents to participating grantees.

sdy logo - SUDDEN DEATH IN THE YOUNG REGISTRY

Visit the Sudden Death in the Young Registry for more information and read published The Sudden Death in the Young Registry: Collaborating to Understand and Reduce Mortality, co-authored by Theresa Covington, MPH, past Parent Heart Watch Board Member.

The SDY Case Registry was created to increase the understanding of the prevalence, causes, and risk factors for infants, children, and young adults who die suddenly and unexpectedly.

The SDY Registry began as a collaboration between the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). It is modeled after the successful Sudden Unexpected Infant Death (SUID) Case Registry, which currently tracks sudden unexpected deaths in infants up to age 1 in nine states. In 2019 both SDY and SUID studies will be merged.

In addition, the SDY registry builds on the work of state and local Child Death Review (CDR) programs. CDR teams conduct and review comprehensive death investigations involving infants, children and young adults, and also actively work on ways to avert preventable deaths. These CDR teams are collecting comprehensive data on new cases of infants, children, and young adults who died suddenly and unexpectedly. That data is then submitted to the registry. Autopsy protocols are being standardized, and a DNA sample will be collected in some instances. The Registry is anticipated to identify and review 850 cases per year and obtain consent for the associated DNA sample on the case for about 250 cases per year.

Families of youth lost to sudden cardiac arrest in funded jurisdictions can support this study by consenting (at no cost) to bank DNA and participate in research genetic testing as well as possible diagnostic testing. Funded jurisdictions currently include: San Francisco, California; Delaware; Georgia; Minnesota; New Hampshire; New Jersey; Nevada; Tennessee; Virginia Tidewater Region; and selected jurisdictions in Wisconsin. In 2018 new jurisdictions will be invited to apply. Visit the Sudden Death in the Young Registry for an updated list.

Families of youth lost to sudden cardiac arrest in funded jurisdictions can support this study by consenting (at no cost) to bank DNA and participate in research genetic testing as well as possible diagnostic testing. Funded jurisdictions include: San Francisco, California; Delaware; Georgia; Minnesota; New Hampshire; New Jersey; Nevada; Tennessee; Virginia Tidewater Region; and selected jurisdictions in Wisconsin. Visit the Sudden Death in the Young Registry for more information.

 


 

Since developing the SDY Case Registry, information has been disseminated through National Institutes for Health and Centers for Disease Control and Prevention websites, in addition to the Michigan Public Health Institute’s National Center for the Review and Prevention of Child Deaths. Presentations have been delivered at over 30 national conferences including the National Association of Medical Examiners, Parent Heart Watch, Parents Against Mortality in Epilepsy, and the American College of Cardiology.

 

Visit the Sudden Death in the Young Registry for more information.

Pediatrics also published The Sudden Death in the Young Registry: Collaborating to Understand and Reduce Mortality, co-authored by Parent Heart Watch Board member Theresa Covington, MPH.

"Parent Heart watch has long advocated for a national registry that would count all Sudden Cardiac Deaths in youth, to provide evidence that these tragedies are not rare events. The tenacious efforts of members to educate and advocate for a registry influenced heightened federal interest, which led to the 2012 establishment of the Sudden Death in Young Case Registry—a partnership between NIH, CDC and the National Center for Child Death Review, with PHW on the Registry Advisory Committee."
Theresa Covington, Former Executive Director - National Center for the Review and Prevention of Child Deaths