Description of Collaborative Activity: |
The SDY Case Registry is a collaborative effort between the National Institutes of Health, the Centers for Disease Control and Prevention, and the Michigan Public Health Institute. Its goals are to: 1) describe the incidence of SDY in the United States using population-based surveillance, 2) compile data from SDY cases to create a resource of information and deoxyribonucleic acid (DNA) samples for research, 3) encourage standardized approaches to investigation, autopsy, and categorization of SDY cases, 4) develop partnerships between local, state, and federal stakeholders towards a common goal of understanding and preventing SDY, and 5) support families who have lost loved ones to SDY by providing resources on bereavement and medical evaluation of surviving family members. The SDY Case Registry will provide valuable incidence data and will enhance understanding of characteristics of SDY cases to inform development of targeted prevention efforts. |
