Request For Information- Defining a Research Agenda for Sudden Cardiac Death in the Young

Notice Number: NOT-HL-11-162

Key Dates
Release Date: November 15, 2011
Response Due Date:  December 16, 2011

Issued by
National Heart, Lung, and Blood Institute (NHLBI)


The National Heart, Lung and Blood Institute (NHBLI) seeks comments on the current and evolving scientific proposals and areas of interest in the field of sudden cardiac death in the young.


Sudden cardiac death in the young (SCDY) is a tragedy that affects children and young adults of all ages, making it a critical public health concern.  Development of effective screening and prevention strategies is currently limited by the lack of prospectively defined epidemiological data, including incidence rates and etiology.  To address this knowledge gap, the NHLBI anticipates initiating a two-phase program to explore and provide greater understanding of SCDY. 

During the first phase, the NHLBI, in coordination with the CDC and others, plans to develop a surveillance system and registry that will broaden and enhance the activities of the National Center for Child Death Review ( ) and the Sudden Unexpected Infant Death (SUID) Registry (  This phase will result in the first prospective, population-based data set compiled for the comprehensive evaluation of SCDY in the United States.  It will include data from death certificates, medical records, death scene investigations, and pathology reports.  In addition, a serum sample for DNA extraction will be collected from a subset of cases.

Through the NIH grant mechanism, the second phase of the program is envisioned to support scientific research through the use of the registry data and DNA samples.  

Information Requested:

The second phase of the program would require that specific applications be submitted for peer review.   In an effort to develop a potential funding opportunity announcement (FOA), the NHLBI invites interested parties to respond to the questions below:

  1. What scientifically important and feasible research project(s) could be accomplished using the phenotypic data and/or DNA samples from the registry described above?  Feel free to describe more than one discrete project.
  2. What range of costs might a project of that scope require?

Response Guidelines

This Request for Information (RFI) is covered under the Privacy Act System of Records 09-25-0156, “Records of Participants in Programs and Respondents in Surveys Used to Evaluate Programs of the Public Health Service, HHS/PHS/NIH/OD.” 

This RFI is for collecting information to improve the planning purposes only and should not be construed as a solicitation for applications or as an obligation on the part of the Government to provide support for any ideas identified in response to it.  The Government does not intend to award a grant or contract on the basis of the responses to this RFI.  Nor does it otherwise pay for the preparation of any information submitted or for the Government’s use of such information.  Acknowledgement of receipt of responses will not be made, nor will respondents be notified of the Government’s evaluation of the information received. All responses will be regarded as confidential.  No basis for claims against the Government shall arise as a result of a response to this request for information or the Government’s use of such information as either part of our evaluation process or in developing specifications for any subsequent announcement.  Not responding to this RFI does not preclude participation in any related future solicitations or FOAs.  Any proprietary information should be so marked. NHLBI appreciates your input.

Responses should include this Notice identifier and are due no later than 4 PM EST, Monday, December 16, 2011.

Please indicate “Responses” in the subject line and send responses to:



Specific questions regarding this request for information may be directed to:

Kristin M. Burns, MD
Please indicate “Questions” in the subject line

Weekly TOC for this Announcement
NIH Funding Opportunities and Notices

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