| LAUREN W. YOWELUNH MCLESTER-DAVIS (Oneida Nation of Wisconsin), Scientist and Director of Indigenous Science Advocacy in the Native American Center for Health Professions at the University of Wisconsin – Madison

| JORDAN P. LEWIS (Aleut, Native Village of Naknek), Associate Director of Memory Keepers Medical Discovery Team; Department of Family Medicine and BioBehavioral Health Professor at the University of Minnesota Medical School – Duluth

By 2050, it is predicted that 1 in 3 Indigenous Elders in the United States will be diagnosed with Alzheimer’s disease or a related dementia (ADRD). While non-Indigenous National Institutes of Aging (NIA) research programs collect blood samples, cognitive assessments, health information, and other data from Indigenous people to better understand ADRD, there is a paucity of culturally safe treatment and understanding of ADRD for Indigenous communities and Tribal Nations. Our Indigenous ADRD Data Sovereignty Advisory Group was previously funded by the Urban Indian Health Institute’s Decolonizing Data Grant to address data sovereignty in the NIA funded Alzheimer’s Disease Research Centers (ADRCs) and National Alzheimer’s Coordinating Center (NACC) data collection and storage. We are now funded by the NIA to continue this work on data sovereignty for Indigenous participants of unknown Tribal affiliation in the NACC datasets. Our Advisory Group is entirely made of Indigenous researchers and we have presented our work and received feedback at various stakeholder gatherings in Indian Country and externally with ADRD researchers to define how scientists can appropriately collaborate with Tribes for Alzheimer’s disease and dementia research programs while centering Tribal sovereignty. At the U.S. Indigenous Data Sovereignty and Governance Summit: Building Action and Power, we aim to discuss current protections for Indigenous Alzheimer’s disease and dementia data in the NACC dataset; identify future protections for electronic medical records, biological samples, and other data collected from Indigenous elders; and discuss our process for actualizing FAIR and CARE principles in the NACC datasets.