TRUSTEES OF BOSTON UNIVERSITY
The proposed project will quantify methods to educate Black elders and their families about clinical research and brain donation program participation to develop and implement an educational protocol to increase research participation and donation compliance. These aims will further the goals of the Boston University Alzheimer's Disease Center (BU ADC) Education & Information Transfer Core (EITC) to recruit, retain, and provide community-based education to Black elders by emphasizing a unique aspect of under-representation in research participation among African American elders. Given the importance of brain donation in understanding Alzheimer's disease (AD) and the low rates of participation by African Americans in clinical research and organ donation programs, the development of effective methods of educating Black elders about brain donation is essential. The aims of this proposed supplement will leverage the resources of the existing BU ADC participant registry. A series of focus group will be held with a subset of African American registry participants and their family members to determine appropriate methods to discuss clinical research participation and brain donation with loved ones. Based on the information gathered at these focus groups, a culturally-relevant, educational protocol will be developed by the EITC team and subsequently revised in follow-up verification focus groups. The educational protocol will be tested against the BU ADC's standard clinical research and brain donation protocol. Once verified and validated, the educational protocol will be disseminated to other NIA-funded ADCs and electronically available on the BU ADC website. These findings will be easily generalizable to other neurodegenerative research settings that emphasize brain donation to advance science.