Characterizing the high prevalence and founder effects for Kennedy’s disease in Indigenous peoples of western Canada.
In this project, we will learn about the prevalence and genetic findings of patients with Kennedy's disease who are of Indigenous descent in western Canada. We have a community engagement plan that will include patients as partners in this research. Participants will be recruited using clinic databases, research assistant contact in our clinics, and contact with family members of recruited participants. We will collect clinical data and family history information. We will also collect DNA samples to identify founder haplotypes. Once we have estimates for the prevalence and genetic origins of Kennedy's disease in these communities, we will communicate results back to participants and communities. This will lead to future study and one of our main goals is to ensure that these communities are receiving the resources they need to support people affected by Kennedy's disease.
