December 1, 2023
NIH Launches RADx Tribal Data Repository
The COVID-19 pandemic has disproportionately affected American Indian and Alaska Native persons, including an undue burden of infections, hospitalizations, and deaths. Early in the pandemic, the challenges of limited access to COVID-19 tests across communities that are underserved led the National Institutes of Health (NIH) to establish the Rapid Acceleration of Diagnostics (RADx) Underserved Populations (RADx-UP). This initiative aims to accelerate innovation in developing and implementing testing strategies for COVID-19 based on community-engaged research.
Now, three years since the launch of RADx initiative, there are 11 funded research projects focused on understanding and addressing COVID-19 disparities within American Indian and Alaska Native communities. Important 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. With this in mind, we are pleased to announce the launch of the Rapid Acceleration of Diagnostics (RADx) Tribal Data Repository (TDR): Data for Indigenous Implementations, Interventions, and Innovations (D4I).
This new project will be led by Stanford University in partnership with the Native BioData Consortium, the first Indigenous led 501(c)(3) nonprofit research organization and biodata repository within the geographic borders and legal jurisdiction of a Tribal nation. The competition and ultimate selection of the awardee resulted from the input sought from the Tribal Consultation on COVID-19 Research in May 2020 and the Tribal Consultation on RADx Tribal Data Repository in July 2021.
RADx TDR 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.
RADx TDR is a novel initiative that 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. We look forward to the ongoing collaboration with the RADx-UP Coordination and Data Collection Center, other data collection centers funded through RADx, and NIH staff.
As NIMHD Director, I want to express my sincere gratitude to my colleagues within NIH, including the NIH Office of the Director, the Office of Data Science Strategy, and the Tribal Health Research Office, and especially the participants of the Tribal consultations for their collaboration and guidance on this groundbreaking project.
I encourage you to read more about this important initiative in the recent blog by Dr. Susan Gregurick, Director of the Office of Data Science Strategy at NIH.
NIH is deeply committed to partnering with Tribal nations to support the health of American Indian and Alaska Native communities. Across NIH, there is a growing number of Tribal health research efforts with an emphasis on trust, respect, and Tribal sovereignty. We look forward to the work of RADx TDR as we continue to understand and address the impacts of COVID-19 and other health disparities.
Eliseo J. Pérez-Stable, M.D.
Director, National Institute on Minority Health and Health Disparities
Co-Chair, RADx-UP Initiative
Page published Dec. 1, 2023