Notice of Funding Opportunity: Removing Barriers to Participating in the SUID and SDY Case Registry

The purpose of this funding is to help identify and remove barriers faced by CDR programs/teams/partners, to build capacity for sites to conduct Case Registry activities, and to prepare them to apply for the upcoming funding cycle.

The funds will be awarded to support CDR programs/teams/partners based on the ability to identify and plan to improve one or more barriers to implementing surveillance activities (listed below). Funds will be distributed based on the following criteria: 1) The CDR program’s/team’s/partner’s ability to identify an appropriate barrier(s) and 2) The ability and feasibility of the CDR program/team/partner to address the identified barrier(s) within the funding timeframe.

The goal of the Case Registry is to conduct public health surveillance on unexpected deaths. Sudden Unexpected Infant Death (SUID) surveillance is the core component of the Case Registry. In addition to SUID, the current Case Registry allows for participation in an optional component expanding surveillance to include Sudden Death in the Young (SDY). The Centers for Disease Control and Prevention (CDC) and federal partners at the National Institutes of Health (NIH) developed the SDY component of the Case Registry to explore and provide greater understanding of SDY. SDY activities broaden the case definition and increases the age of death to at least 17 or the maximum age set by CDR legislation. By following the National Center’s protocols and by utilizing existing death investigation systems, current participants of the Case Registry strengthen their surveillance of SUID and SDY by ensuring 100% of cases are captured, unknown and missing responses are minimal, and timely data entry is completed. All current Case Registry participants are required to complete the SUID activities and some also conduct SDY activities.  Both components will be part of CDC’s new funding as well as a new prevention component.

View the previous SUID & SDY Case Registry Notice of Funding Opportunity for 2018-2023 surveillance.

Current SUID activities include:

  • Identify all SUID cases
  • Compile complete case information
  • Conduct multidisciplinary reviews for every case
  • Categorize every case using established criteria and algorithms
  • Enter all case information into the National Fatality Review Case Reporting System (NFR-CRS)
  • Review individual cases for data quality assurance
  • Improve surveillance data quality and timeliness over time
  • Disseminate data to inform policy and practice changes in agencies that serve families
  • Identify risk and protective factors associated with these deaths

Current SDY activities include:

  • Follow the SDY Autopsy Guidance
  • Collect a biospecimen at autopsy on all eligible cases
  • Conduct a multidisciplinary advanced review
  • Compile additional SDY-related variables into the NFR-CRS
  • Offer every family of every case the opportunity to consent to save a biospecimen for later research (later research is outside of the scope of CDC’s non-research Cooperative Agreement)
  • Partner with the data coordinating center for NIH funded activities
  • Advanced Review