This research focuses on the intersection of two national longitudinal health data collection projects: The Children’s Brain Tumor Tissue Consortium (CBTTC) and the PEDSnet Clinical Data Research Network (CDRN) with the intention of harmonizing the two national projects as they grow to aid in the human annotation of biologically based resources with large-scale automated health data networks. The methods in this proposal will use two common observational research methods utilized by two national organizations to develop ways of doing large scale data and system integration for rare and deadly diseases by opening this data to others outside the biomedical domain.
Participating PEDSnet Sites:
Study Investigator:
Clinical Outcomes by Language of Care in Pediatric Oncology
Although language disparities in outcomes are well documented in general pediatrics and adult oncology, little is known in pediatric oncology. Patient or family language is not included in many multi- institutional databases and patient registries, limiting studies of language-based inequities…
Extreme weather impacts on children’s acute and chronic health outcomes; a multisite study with evaluation of vulnerabilities
The “Extreme Weather and Pediatric Health Outcomes” study investigates the impact of climate change-related extreme weather events, such as extreme heat and heavy rainfall, on children’s health across the United States. This innovative research aims to address critical knowledge gaps…
Characterization of Babies Born with Hemolytic Disease of the Fetus/Newborn (HDFN)
Hemolytic disease of the fetus and newborn (HDFN) otherwise known as erythroblastosis fetalis, is a disease in which fetal and neonatal erythrocytes are destroyed by maternal IgG alloantibodies. Before the first RhD immunoprophylaxis was introduced as a treatment in 1968,…