The LiFT UP Li-Fraumeni & TP53: Understanding & Progress Study

About the Study

The LiFT UP Study is a research project for individuals and families from around the world. The goal is to learn more about adults and children who have a change in the TP53 gene in their blood to better predict their specific cancer risks. This may be Li-Fraumeni syndrome (LFS) or something else, which we will examine in the LiFT UP Study. This is a collaborative study, so you may join even if you already participate in other LFS studies! 

Help us to learn more about cancer risks for families with Li-Fraumeni syndrome and other TP53 gene changes.

What the Study Involves

Participating in our study means you’ll be asked to consider the following:

• Speaking with a member of the study team, who will reach out to you using the information you provide on the eligibility form.
• Signing a consent form to participate.
• Filling out a questionnaire about your personal and family history, then short follow-up questionnaires each year.
• Sharing your medical records related to your TP53 genetic test and any cancers you may have had. All records will be kept confidential.
• Providing a blood and saliva sample at no cost to you (and possibly, a blood draw and/or saliva sample may be done once a year).
• Providing some eyebrow hairs.
• Answering short questionnaires periodically.
• We may ask you to consider inviting family members to enroll.

You may be eligible to join the study if you have any of the following: 

• A TP53 genetic mutation found on genetic testing
• A blood relative who has a TP53 genetic mutation
• A TP53 finding on genetic testing and a diagnosis of "CHIP" or "ACE"  

You are not eligible for the study if you:  

• Do not have a TP53 genetic mutation found on genetic testing, or
• Do not have a blood relative who has a TP53 genetic mutation, or
• Do not have a TP53 finding on genetic testing and a diagnosis of "CHIP" or "ACE"