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Frequently Asked Questions about the Sudden Death in the Young Case Registry

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Phase I and Phase II

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Q: What is the Sudden Death in the Young (SDY) Case Registry?

A: The SDY Case Registry is a resource designed to increase understanding of the prevalence, causes and risk factors for sudden death in the young. It is funded by the National Heart, Lung, and Blood Institute (NHLBI), the National Institute of Neurological Disorders and Stroke (NINDS), and the Centers for Disease Control and Prevention (CDC).  The Data Coordinating Center is at the Michigan Public Health Institute, and the biorepository is at the University of Michigan.

Child death review teams in multiple jurisdictions will collect comprehensive data on new cases of infants, children, and young adults ≤19 years of age who died suddenly and unexpectedly and submit that data to the registry. Autopsy protocols will be standardized, and a DNA sample will be collected in a subset of cases. Cases will undergo additional local review by experts in sudden cardiac death, sudden unexpected death in epilepsy (SUDEP) and pathology. The SDY Case Registry is an expansion of the CDC's Sudden Unexpected Infant Death Case Registry, which currently tracks sudden unexpected deaths in infants up to age 1 in nine states.

In June 2014, state health departments applied to the CDC’s Funding Opportunity Announcement (FOA) to participate in the SDY Case Registry. On September 30, 2014, the CDC awarded grants to the following jurisdictions to participate:

  • The Regents of the University of California, San Francisco-acting as a bona fide agent of the California Department of Public Health (City of San Francisco)
  • Delaware Department of Health and Social Services (statewide)
  • Georgia Bureau of Investigation-acting as a bona fide agent for the Georgia Department of Health (statewide)
  • Minnesota Department of Health (statewide)
  • State of New Hampshire Department of Health and Human Services (statewide)
  • New Jersey Department of Health (statewide)
  • Tennessee Department of Health (statewide)
  • Virginia Department of Health, Office of the Chief Medical Examiner (The Tidewater Region)
  • Children's Hospital of Wisconsin, Inc.-acting as a bona fide agent of the Wisconsin Department of Health Services (ten selected counties)
  • Clark County, Nevada Office of the Coroner/Medical Examiner (statewide)

SDY Registry Grantees

Data collection for the SDY Case Registry began in January 2015.
 

Q: When did the Research Phase (Phase II) begin?

In April, 2016, NHLBI issued cooperative agreements to the following teams to begin Phase II: Research.  The teams will work collaboratively with each other, NHLBI staff, the SDY Case Registry grantees and Steering Committee to use the data and samples from the SDY Case Registry to explore the causes and risk factors for sudden cardiac death in the young.  The program officer at NHLBI for these projects is Kristin M. Burns, MD (kristin.burns@nih.gov).

  • Principal Investigators: Alfred George, Jr., MD and Elizabeth McNally, MD, PhD (Northwestern University at Chicago): Channelopathies and cardiomyopathies among sudden deaths in the young
  • Principal Investigator: Prince Kannankeril, MD, MSCI (Vanderbilt University): Role of genetic variants in sudden death in the young
  • Principal Investigators: Martin Tristani-Firouzi, MD and Mark Yandell, PhD (University of Utah): Integrating genomic and clinical approaches to sudden death in the young

Teams of researchers have also been funded by the NINDS to study sudden unexpected death in epilepsy (SUDEP) through the Center for SUDEP Research (CSR). Investigators who have an interest in studying SUDEP using data and samples from the SDY Case Registry are encouraged to contact Vicky Whittemore, NINDS Program Director: vicky.whittemore@ninds.gov.

Information about the CSR is available at:  www.csr.case.edu

 

Q: How can I participate in the Sudden Death in the Young Registry?

For scientists with an interest in studying sudden death in the young:

A: State public health departments or their bona fide agents are eligible to participate as grantees in gathering information for the SDY Case Registry. Funded grantees will work with their child death review programs to conduct reviews on their cases of sudden and unexplained deaths in youth, and engage with medical specialists (including medical examiners/coroners, cardiologists, and neurologists) to conduct advanced reviews. 

Cardiologists, neurologists, and pathologists and other subject matter experts interested in participating in child death review or advanced review teams should contact the SDY Case Registry to be connected with nearby participating jurisdictions.

Sudden Death in the Young Case Registry
c/o Michigan Public Health Institute
Telephone: 800-656-2434
Email: info@SDYregistry.org

Scientists will be able to access the SDY Case Registry data to explore the causes and characteristics of  sudden death in the young.  In November, 2014, the NHLBI released a Notice of Intent to Publish a Funding Opportunity Announcement for Sudden Death in the Young.

For individuals who have lost a loved one to sudden death:

A: We hope you will support our efforts by raising awareness about the SDY Case Registry. Beginning in 2015, the registry will be collecting data on new cases of sudden death in the young through the Child Death Review System in the grantee jurisdictions. Unfortunately, we can only receive data through participating grantees. We cannot receive data from parents or other caregivers or data related to cases that occurred before 2015 or outside of the funded jurisdictions.

Q: What background information and tools are available for the SDY Case Registry?

A: The Sudden Death in the Young Case Registry is an expansion of the Sudden Unexpected Infant Death (SUID) Case Registry, which is built on the National Center for Child Death Review system. Information about the SUID Case Registry and the Child Death Review System can be found at the following links:

Q: How many cases does the SDY Case Registry anticipate each year?

A: Because there are no consistent estimates for the number of these types of SDY cases that occur each year, one of the main goals of the SDY Case Registry is to establish incidence of Sudden Death in the Young, including Sudden Cardiac Death (SCD) and Sudden Unexpected Death in Epilepsy (SUDEP) in the young. CDC and NHLBI used vital records through the CDC Wonder website to develop a preliminary estimate of the number of cases that will be captured by the SDY Case Registry each year. The funded states/jurisdictions are expected to collect population-based information on 100% of the SDY cases that fit the case definition. It is anticipated that there will be about 1000 cases identified each project year, and about two thirds of those cases will be infants. 

This is estimated using the CDC Wonder ‘Detailed Mortality’ database and including the following ICD 10 chapters and codes:

  • For infants (less than 1 year of age) – Chapters R, V, W, X, Y (SUID related) and, when autopsy was yes or unknown, Chapters G (nervous system) and I (circulatory system).
  • For children 1 to maximum age of Child Death Review Legislation in the funded jurisdiction* - Chapters G, I and R and W65-74 (drowning) when autopsy was yes or unknown.
  • In addition, for children 16 – maximum age of Child Death Review Legislation in the funded jurisdictions* - V20-69 (transport accident-occupant of vehicle)

 *Grantee jurisdictions are collecting data for cases up to the maximum age of their state’s Child Death Review Legislation; which ranges from 17-25 years of age.

Q: What types of samples will be available to researchers?

A: DNA will be extracted from EDTA blood, and if this does not provide sufficient DNA, fresh frozen liver tissue will be used for DNA extraction.  DNA samples will be stored at the University of Michigan SDY Biorepository. In cases where consent is obtained, DNA samples will be available for research. The data and samples will be used to create a resource that will be used by NIH-funded researchers to investigate SDY.

Q: When did the CDC’s SUID Registry start? Can researchers access SUID data collected prior to the start of the SDY Registry?

A: The SUID Registry started in 2009. Researchers will be able to access SUID data collected prior to the SDY Case Registry.

Q: Is data being collected on cardiac arrest survivors in the SDY Case Registry?

A: Although scientifically important, the SDY Case Registry’s infrastructure is not set-up to study sudden cardiac arrest survivors.  The infrastructure of the SDY Registry is based on the Child Death Review system.  Survivor cases are not reviewed through Child Death Review.

Additional Resources

 

Last Updated: May 13, 2016