The National Disease Research Interchange (NDRI), in collaboration with Children’s Hospital of Philadelphia (CHOP), the University of Maryland’s Medicine Department of Pediatrics, and John Hopkins All Children’s Hospital have been awarded a research grant of $12.5M over five years to collaborate on the developmental Genotype-Tissue Expression (dGTEx) project. The dGTEx project will establish the first comprehensive public resource correlating gene expression and genetic variation in pediatric tissues from all major organ systems in the human body. This project is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute of Mental Health (NIMH), and the National Institute of Neurological Disorders and Stroke (NINDS).

“NDRI is proud to partner with our esteemed collaborators and contribute our capabilities and expertise to the important goals of the dGTEx project. NDRI has a highly successful track-record of planning and executing complex, multi-site/multi-year projects that produce research infrastructure resources that are game-changing for the scientific community,” said Bill Leinweber, President and CEO of NDRI.

NDRI and these collaborators will support the advancement of dGTEx by providing a multi-institutional effort with extensive expertise in pediatric recoveries, research, pathology, imaging, and biobanking, to establish the pediatric Biospecimen Procurement Center (BPC). This breadth of expertise is essential for the BPC to provide well-annotated, suitable biospecimens to the dGTEx Laboratory Data Analysis Collection Center (LDACC) for cutting-edge experimental methodologies.

“The resources the dGTEx project will provide for insight to tissue and cell specific gene expression during development and in pediatric and adult-onset disease is unparalleled,” said Mary J.C. Hendrix, Chair of the NDRI Board of Directors and President of Shepherd University. “NDRI’s recognized world-leadership in biospecimen procurement, preservation and distribution methods will serve as a strong foundation for the dGTEx project.”

In order to advance our current understandings of the Ethical, Legal, and Social Implications (ELSI) in pediatric tissue donation, the dGTEx BPC includes an ELSI study. For a more complete analysis of these challenges, the dGTEx ELSI study is taking a two pronged approach by evaluating Tissue Requesters and Family Decision Makers of both children that are deceased and children at a high-risk of mortality with a focus on diversity, equity, and inclusion to gain broad perspectives on ELSI factors for tissue donation.

The ELSI study will be led by pediatric experts, such as Raquel Hernandez MD, MPH FAAP, Assistant Professor of Pediatrics, and Director of the Program in Pediatric Health Equities Research at John Hopkins All Children’s Hospital. The study is expected to provide opportunities to include perspectives from culturally and linguistically diverse families, tissue requesters as well as community collaborators. The 360◦ approach is expected to provide critical perspectives on best practices related to pediatric tissue donation.

Added Thomas Blanchard, PhD, Associate Professor of Pediatrics at the University of Maryland School of Medicine and Director of the University of Maryland Brain and Tissue Bank at the University of Maryland School of Medicine’s Department of Pediatrics: “The dGTEx project includes the study of samples from the brain, which requires the entire brain to be recovered, processed and stored in a very particular manner. Our facility is highly regarded for its focus on the collection, preservation, and storage of brains from pediatric donors of all ages. As such, we are uniquely suited to work with NDRI and the Children’s Hospital of Philadelphia to receive and characterize the brains to be collected in this study.”

The scope of the dGTEx project encompasses empowering the advancement of pediatric research, addressing ELSI challenges, and developing new clinical approaches to treat pediatric disorders. The project will commence in 2021 and will be concluded in 2026.

About NDRI

The National Disease Research Interchange (NDRI) is the nation’s leading source of human tissues, cells and organs for scientific research. A not-for-profit 501 (c) (3) organization founded in 1980, NDRI is funded in part by the National Institutes of Health, public and private foundations and organizations, pharmaceutical and biotechnology corporations. NDRI is a 24/7 operation that partners with a nationwide network of over 130 tissue source sites (TSS), including organ procurement organizations (OPOs), tissue banks, eye banks, and hospitals. The TSS, are distributed throughout the USA, in 45 states, with concentrations in major metropolitan areas on both the east and west coasts. Their wide geographic distribution allows NDRI to provide biospecimens from donor populations with diverse demographics and also facilitates the timely and efficient provision of fresh tissues directly to researchers across the U.S. and around the world. By serving as the liaison between procurement sources and the research community, NDRI is uniquely positioned to support breakthrough advances and discoveries that can affect advances in the treatment and cure of human diseases.

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