Child Death Review Case Reporting System Data Use Agreement

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responsibility for compliance with all terms of the Contract for Data by employees of the Receiving Institution, including the day-to-day security of the electronic data and all printed output derived from the files. Each additional researcher who will have access to the NCRPCD dataset must be identified on the Application for Data and must sign the Confidentiality Agreement attached (Attachment 3). The applicants may not release or permit others to release the dataset in whole or in part to any persons other than those identified in the Application for Data. Access to the dataset is also subject to the following requirements: 1. The researchers given access to the Center's dataset may not conduct analyses of the data for purposes other than those described in the approved Application for Data. Applicants will not alter the approved use of the data in the research design unless they have notified and obtained written permission for the alteration from NCRPCD. 2. The PI must obtain IRB approval for the proposed research. Letters of approval must be submitted to NCRPCD prior to release of data for approved analyses. 3. All data shared are and shall at all times remain the sole property of the state and local county teams which performed the child death reviews that are the source of the data. States have the right of first refusal to participate in this research project if the PI plans to publish or publicly release any analysis or results that identifies individual states. It is permissible, however, to list the states included in the dataset, as long as no data are attributed to specific states, and the states have authorized this acknowledgement. States will be asked whether they wish to be specifically acknowledged in any project publication or presentation. 4. The researchers must not attempt nor permit others to attempt to use the dataset to learn the identity of any decedent. If the identity of a decedent should be inadvertently discovered by the PI or any other individual, the PI must make no use of this knowledge, permit others to use the knowledge, or inform anyone else of this knowledge, and must inform NCRPCD of the discovery so it can prevent future discoveries of this nature. 5. No data will be released that identifies data by state jurisdiction without the explicit approval of the state(s). 6. Only aggregated data with cell counts of six or more cases will be released and reported in any analysis. Cells less than six cases will be aggregated with other like cells. 7. All oral and written presentations or other distribution of information resulting from the use of this dataset must be developed with adequate provision for the accuracy, reliability and integrity of the data. 8. All oral and written presentations or other distribution of information resulting from the use of the requested data must be submitted to NCRPCD for review at least two weeks prior to presentation or submission to a journal or other source of publication. The purpose of this review is to determine whether the research was completed in the manner specified in the Application and whether the analysis is in the spirit of Child Death Review and the NCRPCD mission, and to permit NCRPCD to have advance notice of potential issues pertaining to the analysis and/or results. Any additional or other use of these data will be considered a breach of the Contract for Data, unless agreed upon in writing by both parties beforehand. 16