In 1999, Dr. Jeff Murray established an IRB-approved biorepository to collect samples from neonates (born at the  University of Iowa Hospitals and Clinics) and their family members to enable the investigation of genetic factors in birth defects and other neonatal conditions and illnesses. In 2005, Dr. Murray secured additional funding that allowed increased recruitment of all infants born preterm and cared for in the NICU at UIHC. Dr. Murray also obtained funding based on the initial success of this biorepository to bring in samples from other sites (Pittsburgh, Rochester NY, Durham, Argentina and Denmark) creating a far larger set of samples and data that can also be shared. In addition, Dr. Dagle has obtained samples from Vanderbilt University and UCSF. Even those these collaborations are no longer active, the samples and already collected phenotype and genotype data continue to be available. 

Throughout time, the focus of the Neonatal Biorepository has primarily on collecting DNA samples from infants and their parents to allow both case/control and family-based genetic studies. Infant blood samples are typically obtained from discarded umbilical cord blood and peripheral blood draws, resulting in a quantity of DNA that is sufficient for innumerable sequencing, single nucleotide polymorphism, and epigenetic studies. For many years medical record data was manually abstracted for the biorepository’s clinical and demographic database.

When Dr. Murray transitioned to a position at the Bill & Melinda Gates Foundation in 2015, Dr. Kelli Ryckman, PhD, and Dr. Dagle assumed direction of the Neonatal Biorepository from 2015. During this time, the focus of recruitment was on very preterm infants (≤ 32 weeks gestation). Importantly, a database that included extensive clinical and demographic data that was electronically extracted from the EPIC medical system was developed, and this phenotypic information is available for many infants in the Neonatal Biorepository.

The Neonatal Biorepository temporarily paused all recruitment and sample collection in 2020 when the COVID-19 pandemic began in the US. In 2022, Dr. Ryckman moved to Indiana to be an Associate Dean in the College of Public Health at Indiana University. Dr. Allison Momany, PhD, a mentee of Dr. Murray and Dr. Dagle, became co-director of the Neonatal Biorepository alongside Dr. Dagle. Additionally, a Neonatal Biorepository Steering Committee was formed to support and inform efforts to re-start recruitment and sample collection in the NICU. Drs. Momany, Murray, Dagle, McNamara, and Bermick, as well as Ms. Weathers are the current members of the steering committee. 

While the Neonatal Biorepository has seen many changes over time, the passion and commitment to improving the lives of neonates all over the world has never wavered. Our hope is to improve neonatal and child health outcomes through careful scientific inquiry of biologic mechanisms affecting neonatal health. We believe the best way to accomplish this is through collaboration and shared resources, including sample and data.