Li-Fraumeni syndrome (LFS) and inherited TP53 gene changes can run in families. Having family members join the LiFT UP Study with you is a crucial way for us to learn more and better help people with LFS and TP53 changes.
Should I involve my family?
Involving family members in this study can help us learn more about Li-Fraumeni syndrome. We strongly encourage you to talk about the LiFT UP Study with your relatives. You may also share this website with them.
If your relatives have already had genetic testing, they may also participate in the study. We encourage you or your family members to share this information with us.
Sometimes their information will help us to figure out whether or not your TP53 change is inherited. If you are not sure, please speak with our study team. We may help you to figure out whether you were born with the TP53 variant or it developed later. If you are certain you were not born with the TP53 variant, we will advise you NOT to invite your relatives into the LiFT UP study. Your information is still very important to the study.
How can I share the LiFT UP Study with my family?
You can share the LiFT UP Study information with your family members by sending them a link to this website and/or by giving them our contact information.
Our study team will also reach out to you to suggest which family members would be most helpful to include in this study.
We would appreciate you inviting your relatives to join the LiFT UP study. Your family members can join LiFT UP by reaching out to us directly or by filling out our quick form. On the form, please have your relatives list your name and their relation to you. This helps us link relatives to one another to better understand family cancer risk.
How can my family members get genetic testing if they have not had it before?
Genetic testing for your family members may help us better understand your TP53 result and could help to inform you and your family’s care.
Your family members can get genetic testing in a few different ways:
- Your family members can get genetic testing ordered by their own healthcare providers, and sometimes through the genetics lab that you used
- Family members can also find a genetic counselor close to them using the search tool “Find a genetic counselor” at www.NSGC.org.
If you have any question about how to help include your family members or how they can get genetic testing, you are always welcome to contact us.