Participating in the LiFT UP Study

By joining the LiFT UP Study, you can make a difference and help us to better understand cancer risks for people and families with TP53 changes and/or Li-Fraumeni syndrome (LFS).

Please join our effort to understand these rare conditions.

Who can join the LiFT UP Study?

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

  • A TP53 likely pathogenic or pathogenic variant (change) found on genetic testing
  • A blood relative who has a TP53 variant
  • A TP53 finding on genetic testing and a diagnosis of “CHIP” or “ACE”

If you have any questions about your eligibility for this study, please contact us.

What is involved in participating in the LiFT UP Study?

Participating in the LiFT UP Study means you’ll be asked to consider some or all of the following:

  • Speaking with a member of our study team, who will reach out to you using the information you provide on the eligibility form
  • Signing a consent form
  • Filling out a questionnaire about your personal and family history, then short follow-up questionnaires each year
  • Sharing a copy of your medical records related to your TP53 genetic test and any cancers you may have had. All records will be kept confidential
  • Giving a blood and saliva sample at no cost to you for this research and to be shared with other researchers who are approved to use this material (we’ll arrange for the collection at your convenience)
  • Providing some eyebrow hairs (see our FAQS where we’ll teach you how to collect and send them)
  • Allowing our research team to collect some of your stored tissue samples (from biopsies or surgery) from pathology departments that have them from any procedures you may have had
  • Consenting to be contacted about other optional studies as part of this research
  • Helping us to invite your relatives to participate in this research

Join us

If you are interested in joining the LiFT UP Study, please fill out this form to get started! Once you fill out our form, our study team will get in touch with you.

If you have any questions or would like to speak to someone before joining, you can always contact us at either of our study sites:

City of Hope Study Team
Los Angeles, CA

Dana-Farber Cancer Institute Study Team 
Boston, MA

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