If It Helps Someone, Then I Want to Do It: Perspectives of Persons Living with Dementia on Research Registry Participation
Engaging patients in registry development can increase registries' long-term success and help retain patients who enroll in them. This study involved two semi-structured focus groups with 18 people with dementia and their family members to get their perspectives on registry participation experiences, barriers and facilitators to participation, and potential avenues for improvement of registry processes. The main themes identified included altruistic motives regarding registry participation and privacy of personal health information.
Lee JY, Crooks RE, Pham T, et al. "If it helps someone, then I want to do it": Perspectives of persons living with dementia on research registry participation. Dementia 2019 Feb 5:1471301219827709. doi: 10.1177/1471301219827709. [Epub ahead of print].