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Notice of Special Interest (NOSI): Understanding Sudden Death in the Young Through Research

National Institutes of Health

This Notice of Special Interest (NOSI) highlights interest in receiving grant applications focused on mechanistic, genetic, and other studies to evaluate causes and consequences of, and risk factors for sudden death in the young (SDY) . Studies are required to use phenotypic data and/or DNA samples and/or associated sequence data from the NIH/CDC Sudden Death in the Young (SDY) Case Registry as foundations for their research. Studies may use SDY Case Registry phenotypic data and/or samples and/or sequence data alone or in combination with other cohorts. Results of such studies are required to adhere to the NIH Data Sharing Policy so that the data is disseminated widely and provides an evidence base to advance discussions about screening and prevention of SDY.

The sudden, unexpected loss of a child is a tragic event with significant impact on families and communities. The Sudden Death in the Young (SDY) Case Registry is a unique collaboration between the National Institutes of Health ( NHLBI and NINDS ), the Centers for Disease Control and Prevention (CDC), and state and local public health offices, who are supported for case ascertainment and data collection. The Data Coordinating Center is at the Michigan Public Health Institute , and the biorepository is at the University of Michigan. The Registry was designed to address critical knowledge gaps in the epidemiology and causes of SDY and to develop a resource for research that will enhance the evidence base to inform prevention efforts.

Fundamental gaps in knowledge about incidence, mechanisms, and risk factors for SDY limit the identification of effective prevention efforts. In the majority of SDY cases, after autopsy and investigation, a cause cannot be identified. In deaths where a cause can be identified, sudden, unexpected, non-injury-related infant and child deaths are often due to cardiac causes (myocarditis, cardiomyopathy, coronary artery anomalies, and ion channelopathies), respiratory causes (asthma, pneumonia), sudden unexpected death in epilepsy (SUDEP), and various other infections, neurological, hematologic, and gastrointestinal catastrophes. Because of the high number of unexplained deaths and the lack of evidence regarding their cause(s), there is disagreement about the best approach to prevent SDY. The SDY Case Registry and the associated research efforts should help close these knowledge gaps and provide a foundation of data that can be used to inform targeted prevention efforts.

This notice applies to due dates on or after October 5, 2023, and subsequent receipt dates through January 6, 2028.

NOT-HL-22-040

Specialties

Medical

Medical - Clinical Science

Medical - Basic Science

Medical - Translational

Eligibility Requirements

Sponsor Details

Sponsor Institute/Organizations: National Institutes of Health

Address: National Institutes of Health; 31 Center Drive; MSC 2220; Bethesda; MD 20892-2220; USA

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