Survey for Caregivers of Relatives in Families with an Inherited Mutation Linked to Cancer
Surveys, Registries, Interviews
Study Contact Information:
Sue Friedman, DVM by phone: 954-255-8732 or by email
Survey for Caregivers of Relatives in Families with an Inherited Mutation Linked to Cancer
About the Survey
This anonymous survey is being conducted by researchers at the National Human Genome Research Institute of the National Institutes of Health, in collaboration with Facing Our Risk of Cancer Empowered (FORCE). The goal of this survey is to help researchers understand the caregiving experiences of families affected by hereditary cancer. By sharing your experience with us, you can help us develop more resources to improve the experience of future family caregivers.
Any reports, publications, or tools based on this research will use only group data and will not identify you individually. We will not store any personally identifying information within the survey. Your responses will remain secure to the extent permitted by law. The privacy and confidentiality of all collected information will be maintained at all times during the study process.
Click here to take the survey.
What the Survey Entails
The survey will take approximately 25 minutes to complete. Completing the survey does not provide any direct benefit to you. There is a slight risk you may feel uncomfortable responding to certain questions. Your response to the survey is completely voluntary, and you may end your participation at any time.
People can participate if they:
- Come from a family with an inherited mutation linked to cancer. You do not need to have had testing for, or tested positive for the mutation in your family.
- Have been an informal caregiver to a relative with cancer. Caregiving activities may include: providing for the care needs of your relative, making decisions about your relative’s medical care, coordinating care for your relative, supporting other caregivers.
- Have never acted as a caregiver to a relative with cancer.
- Do not come from a family affected by hereditary cancer.