Child Death Review Case Reporting System Data Use Agreement

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Child Death Review Programs in States Child death review programs vary by state with respect to the types of death reviewed (all deaths, non -natural deaths, all injuries, abuse and neglect, and/or near -deaths, etc.); the maximum age of children whose deaths are reviewed (0-14, 0-17, 0-25, etc.); and the average time between review and death (ranges from 1 to 36 months). Due to these variances, the data are not universally consistent from state to state. Because most states do not review or enter every child fatality into the System, the CDR -CRS should not be directly compared with vital statistics data nor should it be used to compute incidence rates. All of these distinctions among states and limitations must be accounted for and noted in any analysis of the data. More information about child death review programs and selection of cases by states for review can be found at http://www.childdeathreview.org/state.htm. Data Ownership Child death review data entered into the System are owned by the individual state that entered it (per the data use agreement executed between each state and MPHI/NCRPCD). Requests for de - identified, individual case report data will be submitted to the NCPRCD Data Dissemination Committee, per guidelines contained in this document. NCRPCD will inform states participating in the CDR -CRS of all approved applications. For any research request that proposes to identify data by state in any published or publicly released analysis or results, states will be provided an opportunity to have their state's data excluded from the study. Removal of Identifiable Data Elements for Dataset No data file that includes HIPAA-defined personally identifiable elements is available to researchers. The complete Case Report tool contains more than 275 questions (approximately 2,200 data elements) about an individual fatality. (The Case Report form can be viewed and downloaded at www.childdeathreview.or .) Although states often enter HIPPA-defined personally identifiable data elements (child's name, address, date of birth, date of death, date and time of incident, and incident county) into the CDR -CRS, all personally identifiable data elements will be removed from any dataset made available to researchers. The data elements that will be removed from the dataset are listed in Attachment 1 of the Application for Access to De -identified Dataset (Application for Data). The "Narrative" field contained in Section M of the Case Report form will only be released to researchers under special circumstances. To further protect anonymity of states, NCRPCD will create and provide a unique code for each state for each approved research project so that researchers can evaluate variation and control for potential bias in the dataset without identifying the individual states. NCRPCD will retain the coding key. Permitted Data Uses The NCRPCD may report aggregated, de -identified data identified by state to requested parties without state permission. Requests by researchers for de -identified datasets must be made in accordance with the Guidelines for Requesting De -identified Dataset (Guidelines), below, and NCRPCD will only release de -identified datasets in accordance with the Guidelines. The NCRPCD, in collaboration with other parties, may also conduct its own analysis/reporting on de - 14