Kindred Study
https://www.facingourrisk.org/research-clinical-trials/study/255/kindred
Surveys, Registries, Interviews
Interviews with African American people who tested positive for a genetic mutation
Study Contact Information:
Dr Katrina Ellis, PI, [email protected], (734) 615-3487
About the Study
We are talking with African American adults about cancer genetic testing, including those that have received a positive cancer genetic testing result and people with a family member who received testing. We are learning about new and improved ways to support African American individuals and families before, during and after they participate in cancer genetic testing.
Contact Dr. Katrina Ellis, lead researcher on this study at 734-615-3487 or [email protected] if you are interested in participating.
What the Study Involves
Kindred (HUM00187457) is a 5-year study being conducted at the University of Michigan with the overall objective of increasing communication about genetic testing among African American families and the uptake of recommended testing among family members (cascade testing). We will be talking with African American adults that have received cancer genetic testing and people who have a family member who received testing in online focus groups.
We will conduct focus groups with:
- African Americans who were the first in their family to receive cancer genetic testing (Probands) and have positive test results indicating hereditary breast or ovarian cancer (HBOC) or Lynch Syndrome; and,
- family members of African American probands who have been contacted or advised to have genetic testing, and who may/may not have completed the genetic testing themselves (cascade genetic testing).
When individuals express interest in the study, they will be contacted via email, phone call, or letter (depending on preference) regarding steps for enrolling in the study. Individuals will need to complete a short prescreening survey (~10 minutes) to confirm eligibility.
Thereafter, we will be talking with study participants in small discussion groups (focus groups). The groups are separate by role (first person in the family to have genetic testing vs. family member groups) and gender (men vs. women). The groups last for approximately 75-90 minutes. Participants will also be asked to take a short pre-survey before the group meets to provide basis demographic and health information (~15 minutes). The groups will meet virtually at a convenient time via Zoom; the use of video is optional and you can change your name to protect your privacy.
Each participant will receive a $40 incentive for participating in the pre-survey and focus group.
Lead Researcher and Affiliation
Katrina R. Ellis, PhD, MPH, MSW
Assistant Professor
University of Michigan School of Social Work
1080 S University Ave, Ann Arbor, Michigan, 48109
This Study is Open To:
- Adult men and women ages 18 and older
- Self-identify as non-Hispanic African American or Black
- Fluent in English with no cognitive or physical issues that would pose a barrier to virtual group discussions
- Completed genetic testing within the prior five years and received a positive test result indicating hereditary breast or ovarian cancer (HBOC) or Lynch Syndrome and is the first in their family to be tested OR the family member of someone who has gotten tested (who may or may not have received testing themselves)
- Up to two people per family can be included in this study (i.e., one person who is first in family to be tested and a family member of that individual)
This Study is Not Open To:
- An individual under the age of 18
- Does not self-identify as non-Hispanic African American or Black
- Is not fluent in English
- Has cognitive or physical issues that would be a barrier to virtual group discussions
- Had genetic testing more than five years ago
- Has two or more relatives already enrolled in the study
About FORCE
FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.