Notice of Intent to Publish a Funding Opportunity Announcement for Sudden Death in the Young: Population-Based Studies (U01)

Notice Number:


Key Dates

Release Date: November 20, 2014

Estimated Publication Date of Announcement: March 2015

First Estimated Application Due Date: June 2015

Earliest Estimated Award Date: January 2016

Earliest Estimated Start Date: April 2016

Related Announcements


Issued by

National Heart, Lung, and Blood Institute (NHLBI)


The National, Heart, Lung, and Blood Institute (NHLBI) intends to promote a new initiative by publishing a Funding Opportunity Announcement (FOA) to solicit applications for mechanistic, genetic, and other studies to evaluate causes of and risk factors for Sudden Death in the Young. Studies should use clinical data and/or DNA samples from the Sudden Death in the Young Registry as foundations for their research.

This Notice is being provided to allow potential applicants sufficient time to explore data and biospecimen availability and to develop responsive projects.

The FOA is expected to be published in the spring of 2015, with an expected application due date in the summer of 2015.

This FOA will utilize the U01 activity code. An overview of the planned FOA is provided below.

Research Initiative Details

This Notice encourages investigators with expertise and insights into the area of sudden death in the young to begin to consider applying for this new FOA.

The National Heart, Lung, and Blood Institute (NHLBI) and the National Institute of Neurologic Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) are collaborating with the Centers for Disease Control and Prevention (CDC) to develop a two-phase program to provide a greater understanding of sudden death in the young.

During the first phase, the NHLBI, NINDS, and CDC created the Sudden Death in the Young (SDY) Registry, a surveillance system to comprehensively identify SDY cases among individuals less than or equal to 19 years of age in 10 states/jurisdictions and to create a registry of clinical information and DNA samples from each case. The Registry will be used as a resource for NIH-funded researchers to investigate SDY. The SDY Registry operations are directed by a Data Coordinating Center at the Michigan Public Health Institute, and DNA samples are stored at a biorepository at the University of Michigan.

The second phase of the program comprises this FOA, which will support scientific research into SDY using the SDY Registry data and/or DNA samples. Results of such studies are expected to be disseminated widely and to provide an evidence base to advance discussions about SDY screening and prevention.

Investigators will be responsible for developing research protocols using registry data; finding, ascertaining, and characterizing appropriate controls, if needed; and performing additional phenotyping of cases, analyzing data, performing genetic and other evaluations of the DNA samples as required by their study question(s), and returning clinically actionable genetic results to families, if applicable. Investigators will work closely with the participants in the SDY Registry, including state public health agencies or their bona fide agents, medical examiners and coroners, the Data Coordinating Center, the biorepository, the CDC, the NINDS, and the NHLBI to ensure coordination of activities and collaborative transfer of information.



Please direct all inquiries to:

Kristin M. Burns, MD
National Heart, Lung, and Blood Institute (NHLBI)
Telephone: 301-594-6859