Child Death Review Case Reporting System Data Use Agreement

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identified CDR -CRS data without state permission. The NCRPCD will only report aggregated data with cell counts of six or more cases. Required Fees A fee will be charged to each applicant for preparation of the requested dataset. The amount of the fee will be determined by NCRPCD staff. An estimate of this fee will be provided to the applicant upon a preliminary review of the proposal by staff. Fees will be determined based on a price equal to the number of staffing hours estimated to prepare the dataset using the federally approved MPHI MOBUS rates. Fees must be paid in full prior to the release of the dataset to the applicant. NCRPCD reserves the right to waive fees in certain situations. Data Quality In order to standardize the collection and interpretation of data elements, the CDR -CRS contains a comprehensive Data Dictionary that is readily available online when entering cases into the System or as a standalone PDF document that can be used by child death review teams during review meetings. Additionally, NCRPCD is readily available to provide technical assistance about the Case Report tool and is in constant communication with states about data and reporting questions. Since the data are owned by the individual participating states, states are responsible for cleaning data records, and states vary in the degree to which they review data for inconsistencies, incompleteness, or inaccuracies. NCRPCD has found that data quality appears to improve with increased time and training on the System. The Case Report tool contains by design some subjective questions to engage team discussion (e.g., "Was the death preventable?" or "Did an act of omission contribute to the death?"). The subjective nature of some of the questions can, however, make data analysis more problematic. Finally, although teams record in the CDR -CRS which agencies participated in the child death review, the primary data source for each data element is not collected as part of the Case Report tool. If there is a discrepancy in information shared by the different agencies at the review meeting, it is up to the CDR teams to determine the best answer and there is no set primacy rule for data sources. More information about the CDR -CRS and limitations on the use of the data can be found in the February 2011 Supplement to Injury Prevention (Covington TM. The US national child death review case reporting system. Injury Prevention 2011;17 Suppl 1:04437). GUIDELINES FOR REQUESTING DE -IDENTIFIED DATASET Researchers affiliated with eligible Receiving Institutions may apply for access to a de -identified dataset. The Receiving Institution must be an institution of higher education, research organization, non-profit agency or government agency that either employs or contracts with the Investigator. The Institution must be registered with the U.S. Office for Human Research Protections. Any release of data will be subject to a signed Contract for Access to and Use of Data (Contract for Data) between NCRPCD and an authorized representative of the Receiving Institution. The Contract for Data is set out after these Guidelines. An Application for De -identified Dataset (Application for Data) must identify a principal investigator (PI). The PI serves as the primary point of contact for all communications involving the Contract for Data. The PI must sign the Contract for Data, by which the PI assumes W