Project Summary/Abstract Early-onset, or preterm, preeclampsia occurs in only 0.5% of pregnancies, but it is associated with a high risk of long- term maternal complications, as well as high fetal morbidity and mortality. Biomarkers associated with early-onset preeclampsia are needed to identify women at risk of developing early-onset preeclampsia, guide treatment options, and support development of new therapeutic approaches to prevent and treat the disease. Additionally, it is important to understand the long-term consequences of preterm preeclampsia in both the mother and child. However, due to the low incidence of early-onset preeclampsia, it is difficult to obtain data and necessary biospecimens from a sufficient number of women through a single center or study. Whether collected as a prospective biobanking endeavor or leftover residual samples from clinical studies, numerous biospecimens from maternal and pediatric patients reside within storage facilities across the world. These untapped biosamples and their associated data have the potential to greatly enhance maternal and pediatric therapeutics research, especially for rare conditions and diseases such as early-onset preeclampsia. However, there is no single resource to identify sources of maternal and pediatric biospecimens, so often translational researchers seeking such samples may not be aware of their existence. This proposal will characterize the landscape of available maternal and pediatric biospecimens and survey investigators to understand the needs of the translational research community. We will develop The Collaborative Online Perinatal & PEdiatric Repository (COPPER), a user-friendly platform to facilitate identification of biobanks and networks with residual biospecimens available to support maternal and pediatric precision therapy research. Through surveys and working group discussions, we will seek to understand the evolution of regulations relating to future use of biospecimens and propose strategies to enhance the ability to link long-term pediatric outcomes to samples collected during the perinatal period. At the end of this project, we will develop a centralized resource providing information on biorepositories which could support maternal and pediatric translational research and precision therapeutics, develop proposals to enhance the ability to link maternal and child data and specimens, and identify biospecimens and associated clinical data to support future work to develop biomarkers and therapeutic approaches to prevent and treat early-onset preeclampsia.

Project Narrative Translational research in uncommon diseases, such as early-onset preeclampsia, is limited by the lack sufficient sample size at individual sites as well as the ability to longitudinally connect maternal and child biospecimens and data. In order to facilitate identification and exchange of relevant biospecimens among investigators, we will develop the Collaborative Online Perinatal & PEdiatric Repository (COPPER) to provide information from various NIH and non-NIH funded biobanks and studies in maternal and pediatric populations. Through interdisciplinary focus groups, including researchers, clinicians, bioethicists, regulatory personnel, and consumer advocates, we will explore strategies for connecting maternal-pediatric data and biospecimens to support long-term follow-up.