Access to Data
The NRN complies with the NIH Data Sharing Policy and the NIH Genomic Data Sharing Policy. For datasets that have not been previously released in public databases, release of NRN datasets requires the approval of the NRN Steering Committee and a signed Data Use Agreement.
To receive datasets that have not been previously released in public databases, requesting investigators must:
Provide the necessary funds to reimburse the NRN Data Coordinating Center for its efforts towards producing the requested public use datasets.
Have IRB or Ethics Committee approval or documentation of non-human subjects research determination/exemption for the proposed study prior to receiving any human subject data.
Once a request is approved, sign a Data Use Agreement with the NRN Data Coordinating Center. The agreement specifies that the dataset is only to be used for the specific purpose listed in the agreement. The authorized investigator will not copy or distribute it to other people without permission from the NRN Steering Committee. If the recipient moves to a new institution, then a new agreement must be completed.
Agree to protect subject confidentiality and not seek to, or facilitate mechanisms leading to, the identification of individual subjects who participated in the study.
The external requestor is asked to acknowledge the use of the NICHD Neonatal Research Network materials in all relevant applications, presentations, and publications, along with a disclaimer that: "The contents of this report represent the views of the authors and do not represent the views of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network or the National Institutes of Health." This statement will be placed in the acknowledgement section unless journals request its placement elsewhere in the paper.
To begin the process, submit a request specifying the purpose for the request and how the data will be used (e.g., a protocol) using the form here.
Note that a portion of anonymized NRN data from the Retrospective Genomics Repository is publicly available from dbGaP.
Further questions on public release on NRN data can be directed to NRNProtocolSupport@rti.org.