Members of the Genetic Counseling Advisory Group (GCAG) are creating a children’s book about Li-Fraumeni syndrome (LFS) and would like to hear about what you and your child think!
The GCAG has a draft copy of the book, “LFS & Living My Best.” They are asking families to read and answer questions about as a part of a research study. Your child may participate in the study if:
- They are 8-13 years old
- Speak English
- Either have LFS or have a close family member with LFS (i.e. their parent or sibling has LFS)
If your child would like to participate, you and your child will be asked to do the following together:
- Read “LFS & Living My Best.” While reading times vary, this may take about 45 minutes, including time for your child to do the activities in the book.
- Answer a short 10 minute survey after reading the book.
- Participate in a 10-20 minute phone interview (to be scheduled after filling out the survey).
Further details about the study can be found here: https://kgi.co1.qualtrics.com/jfe/form/SV_7WpEJIEMxg2sHEp
If you would like further information, please contact researchers Isabella Brink at firstname.lastname@example.org or (541) 490-6908 and Emily Quinn at Emily_Quinn@kgi.edu or (909) 607-6474.