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 biodata repository and research organization within the geographic boundaries 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 testing in underserved communities led the NIH to establish the Rapid Acceleration of Diagnostics (RADx) for Underserved Populations (RADx UP), which aims to accelerate innovation in the development and implementation of tests. COVID-19 strategies 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, MD, 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 the exchange and responsible access to data. 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 the construction of a secure repository to support the storage, access, harmonization and supervised sharing of data related to testing and COVID-19 vaccination.
Pérez-Stable noted that the repository has great potential to promote tribal participation in research, data sharing and the generation of new knowledge. NIH and the RADx TDR team are committed to continued engagement with tribal leaders and tribal-focused RADx projects.