With $9 million in funding from the National Institutes of Health (NIH), Stanford University is partnering with the Native BioData Consortium to lead the Tribal Data Repository (TDR): Data for Indigenous Implementations, Interventions, and Innovations (D4I).
The Native BioData Consortium is the first Indigenous-led 501(c)(3) nonprofit research organization and biodata repository within the geographic borders and legal jurisdiction of a Tribal nation. NativeBio is located on the Cheyenne River Sioux Reservation in Eagle Butte, South Dakota, according to Native News Online.
Early in the pandemic, the challenges of limited access to COVID-19 tests across communities that are underserved led the NIH to establish the Rapid Acceleration of Diagnostics (RADx) Underserved Populations (RADx UP), which aims to accelerate innovation in developing and implementing testing strategies for COVID-19 based on community-engaged research.
Three years since the launch of the RADx initiative, there are 11 funded research projects focused on understanding and addressing COVID-19 disparities within American Indian and Alaska Native communities.
In a blog post, Eliseo J. Pérez-Stable, M.D., director of the National Institute on Minority Health and Health Disparities and co-chair of the RADx-UP Initiative, noted that key aspects of this research include ensuring responsible data sharing and access with respect for Tribal sovereignty and appropriate governance to maximize partnerships, participation, and community benefit.
The RADx Tribal Data Repository will establish a data repository consistent with Tribal sovereignty for researchers and their collaborators interested in working with RADx data provided by American Indian and Alaska Native research participants to better understand and address the impact of COVID-19 and other health disparities.
Specific activities will include education and training programs on best practices for responsible data sharing and access, and constructing a secure repository to support data storage, access, harmonization, and monitored sharing of data related to COVID-19 testing and vaccination.
Pérez-Stable noted that the repository has strong potential to advance Tribal research engagement, data sharing, and the generation of new knowledge. NIH and the RADx TDR team are committed to continued engagement with Tribal leaders and RADx tribally focused projects.