Sudden Death in the Young (SDY) Registry

SDY has a devastating impact on families, care providers, and the community, and attracts significant public and media attention. The most common diagnoses that increase risk for SDY include hypertrophic cardiomyopathy, coronary artery anomalies of wrong sinus origin, arrhythmogenic right ventricular cardiomyopathy, ion channelopathies, and genetic forms of epilepsy such as Dravet Syndrome. In up to 30% of cases of SCDY no specific diagnosis is found (autopsy negative). Sudden cardiac death has been documented at all ages and may be associated with competitive athletics. Approximately 10-15% of Sudden Infant Death Syndrome (SIDS) cases may be due to ion channelopathies. Similarly, SUDEP has been documented at all ages, and several risk factors have been identified, including some cases originating with ion channelopathies. Rational policy development in the area of screening and prevention is currently limited by the lack of prospectively defined epidemiological data, including incidence rates and etiology for SDY. To address this knowledge gap, CDC, along with federal partners the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) have developed the SDY Registry to explore and provide greater understanding of SDY. Amendment to FOA (5/30-14): The following amendments are being made to this FOA: --The application should be single spaced using Calibri 12 pt and 1" margins. All pages should be numbered. --Table of Contents has no page limit and is not included in the Project Narrative limit. --The Project Abstract has a 1 page maximum. --The Project Narrative (including the work plan) has a 25 page maximum. Excess pages in this section will not be read or considered.