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.
The following NRN Studies are publicly available in N-DASH:
- Early Blood Pressure Management in Extremely Preterm Infants Feasibility Pilot Study (ELGAN BP)
- Early-Onset Sepsis an NICHD/CDC Surveillance Study (EOS)
- Early-Onset Sepsis an NICHD/CDC Surveillance Study II (EOSII)
- Evaluation of Systemic Hypothermia Initiated After 6 Hours of Age in Infants = 36 Weeks Gestation with Hypoxic-Ischemic Encephalopathy: A Bayesian Evaluation (Late Hypothermia)
- Hydrocortisone Treatment of Hypotension in Term and Late Preterm Infants: An Observational Study
- INS-3: A Phase 3, Randomized, Double-Masked, Placebo-Controlled Study of the Efficacy and Safety of myo-Inositol 5% Injection to Increase Survival without Severe Retinopathy of Prematurity (Reduce-ROP) in Extremely Premature Infants (INS3 Trial)
- Optimizing Cooling Strategies at <6 Hours of Age for Neonatal Hypoxic-Ischemic Encephalopathy (Optimizing Cooling)
- Randomized Controlled Trial of Induced Hypothermia for Hypoxic-Ischemic Encephalopathy in Term Infants (Hypothermia)
- The Surfactant Positive Airway Pressure and Pulse Oximetry Trial in Extremely Low Birth Weight Infants
- Inhaled Nitric Oxide for Preterm Infants With Severe Respiratory Failure (Preemie iNO)
- A Randomized Controlled Trial of Benchmarking to Reduce Bronchopulmonary Dysplasia (Benchmarking)
- Advancing Clinical Trials in Neonatal Opioid Withdrawal Syndrome (ACT NOW) Current Experience: Infant Exposure and Treatment (ACT NOW CE)
- A Multi-center Randomized Trial of Laparotomy vs. Drainage as the Initial Surgical Therapy for ELBW Infants with Necrotizing Enterocolitis (NEC) or Isolated Intestinal Perforation (IP): Outcomes at 18-22 Months Adjusted Age (NEST)
- Eating, Sleeping, Consoling for Neonatal Withdrawal: a Function-Based Assessment and Management Approach (ACT NOW ESC)
Further questions on public release on NRN data can be directed to NRNProtocolSupport@rti.org.