Table 4.

Themes, sub-themes, counts and quotes for research participation and barriers to registry participation

Themes	Sub-themes	Counts	Quote
Research participation
Relationships	Family and/or Friends history of dementia	41	“My Mother’s quality of life was shortened by Alzheimer’s. I’s such a devastating affliction for victims and care givers, that I want to support research that may come up with ways to prevent, cure, and manage it.”
Identity	Worry about memory loss	9	“[With family history] I’m now have the target on my back (in God’s name it won’t be hit!!!) and I need to do all I can to make sure any and all research is done to find a cure for those following me.”
	Personal health	21	“I have a more positive attitude toward brain health research since I have some health issues that may ultimately/eventually benefit from such research.”
	Age	9	“As I age, I want to better understand, My aging process, and what I can do to keep or sharpen my cognitive skills.”
Altruism	Researchers – want to help researchers	13	“I am affected by this disease and want to know and grow and help researchers.”
	Importance – believes research is important	44	“What is this, the dark ages? Are people really coming out with negative attitudes towards brain research?”
	Cure – interest in finding a cure	16	“I would like to participate in increasing the knowledge about brain health and hope that my participation will help with diagnoses and treatments in the near and distant future.”
	Help – wants to help	13	“I know we need to find an answer and I want to help and feel it’s my responsibility to help […] But truly support the research.”
Personal knowledge	Brain – interest in brain itself	23	“The brain is everything. I want to know more.”
	Educational – interest in science and learning	12	“I feel we all can contribute to the knowledge base by sharing our experiences. It costs nothing, so why not? I trust the science!!”
Diversity	Progress – wants more research on diverse populations	8	“I am glad that you are including Black people in your study. We have a higher possibility of developing brain problems, so of course we should be included!”
	Concern – worried about the brain health gap	11	“Very little research, specifically for persons of color. My hope has been that attention would eventually be turned in that direction if I stay the course long enough.”
Barriers to registry participation
Time	Personal lack of time	20	“I’m busy working and sometimes don’t have enough time to stop and take a survey.”
	Procrastination	4	“I get the emails reminding me to participate and I procrastinate in the moment and then completely forget.”
	Amount of registry tasks	7	“Some time with a busy schedule the task can be time consuming.”
Attitude	Value of the registry	6	“The study impact is difficult to see, how is this study positively impact the African American community?”
	Misinterpretations of the registry	2	“When I complete the test/evaluation measures, I want to receive feedback on my results. I have had several neuro psych tests and my examiner always give feedback.”
Technology	Technical issues - personal	8	“It’s more convenient to use my phone then I forget to do it in my computer later.”
	Technical issues - registry	6	“ Your screen froze. By the time I received a reply to my informing the team about the problem other responsibilities took over my time.”
Health	Personal health	3	“I have mental health issues that interfere with my ability to participate at times.”