The CDC’s SDY Case Registry organizes state and jurisdictional surveillance activities and collects data on suspected cases of SDY. The registry is a national repository for SDY information and DNA samples. This information is used for research and education. The registry also provides support for families who have lost loved ones to SDY and encourages standardized approaches to investigation, autopsy, and classification of SDY cases. The registry is a collaborative effort among local, state, and federal stakeholders.
The SDY Case Registry provides data about the incidence of SDY in the United States by conducting population-based surveillance. The registry also compiles data from cases of SDY, allowing researchers to better understand the causes of SDY and how to prevent it. In addition, the registry encourages cooperation between state and jurisdictional health departments to improve data collection, analysis, and sharing. The SDY Case Registry is a national resource for researchers investigating the cause of SDY and for the families of those who have died from it.
SDY Case Registry data include demographic and clinical data, laboratory results, resuscitation records, and genetic information on SDY cases. The resuscitation record is a particularly important piece of information for researchers because it can be used to determine the resuscitation status of the victim prior to the onset of symptoms, such as sudden death. This information is useful for epidemiologic studies that can help to identify the risk factors for SDY and develop strategies to prevent it.
The SDY data also provide a baseline for the SDY epidemic in the United States and a tool to assess progress toward the SDY elimination goals. The data are collected in a way that allows for comparison of trends over time and between sites. The SDY Data Reports are published annually and provide summary statistics, as well as trend analysis and descriptive statistics of the data. The reports can be used to measure the effectiveness of interventions, such as public health actions and health care systems.
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