Exploring How People of Caribbean Descent Share Information About Their Genetic Mutations with Family Members
https://www.facingourrisk.org/research-clinical-trials/study/275/exploring-how-people-of-caribbean-descent-share-information-about-their-genetic-mutations-with-their-family-members
Surveys, Registries, Interviews
Survey and interview for people of Caribbean descent who tested positive for a genetic mutation linked to cancer.
Study Contact Information:
Contact Ashana Neale by email at aneale@bu.edu
About the Study
This study is looking into how families share information among Caribbean people who have a genetic mutation linked to an increased risk of cancer. The goal is to understand the experiences of Caribbean people dealing with a higher chance of developing cancer. This study will help us figure out how genetic counselors can better support Caribbean patients and their family members in handling this genetic information.
What the Study Involves
This research is a detailed look into how Caribbean people, who have tested positive for a genetic mutation related to hereditary cancer, share this information within their families. Initially, you'll be asked to complete a survey, which includes giving your consent and answering some basic questions about yourself. The survey should take around 10 minutes. After completing the survey, the main researcher will check if you qualify for the study. If you do, we will contact you for a 45-60 minute virtual interview.
Scan the QR code or click here to take the survey.
Participant Study Timeline:
- Survey Completion (Up to 10 minutes): Begin by filling out the survey, including the consent form and demographic questions.
- Eligibility Confirmation: Following the survey, the researcher will review responses to determine eligibility.
- Contact and Interview Scheduling: Eligible participants will be contacted to schedule a convenient time for a virtual interview lasting 45-60 minutes.
- Compensation: Upon completion of the interview, participants will receive a $25 Visa gift card as a thank-you gesture.
Lead Researchers/Study PIs and Affiliation
Ashana Neale - Boston University Chobanian & Avedisian School of Medicine – Genetic Counseling Graduate Program
This Study is Open To:
People are eligible for this study if they meet the following criteria:
- People who identify as a person of Caribbean descent
- People who have received a positive genetic test result in a gene associated with cancer in between the years 2013-2023
- People who are above the age of 18
This Study is Not Open To:
People are not eligible for this study if they:
- Are not a person of Caribbean descent
- Have not recieved a positive genetic test result in a gene associated with cancer in between the years 2013-2023
- Are not 18 years of age or older
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.