Clinicaltrials.gov identifier:
NCT04541654
Surveys, Registries, Interviews
Study looking at cancer risk for people with Li-Fraumeni syndrome
Study Contact Information:
Please contact the study team at (617) 632-4795 or liftupstudy@DCFI.HARVARD.edu or liftup@coh.org
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 gene in their blood to better predict their specific cancer risks. This may be (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 and other 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 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.
Study Sites
Massachusetts
Boston
Boston Children's Hopsital
Contact: Junne Kamihara, MD at (888) 733-4662 or jkamihara@partners.org
Lead Researcher: Junne Kamihara, MD
Bringham and Women's Hospital
Contact: Judy Garber, MD, MPH at (617) 632-2282 or jegarber@partners.org
Lead Researcher: Judy Garbar, MD, MPH
Dana-Farber Cancer Institute
Contact: Judy Garber, MD, MPH at (617) 763-8821 or judy_garber@dfci.harvard.edu
You may be eligible to join the study if you have any of the following:
- A genetic mutation found on genetic testing
- A blood relative who has a genetic mutation
- A finding on genetic testing and a diagnosis of "CHIP" or "ACE"
You are not eligible for the study if you:
- Do not have a genetic mutation found on genetic testing, or
- Do not have a blood relative who has a genetic mutation, or
- Do not have a finding on genetic testing and a diagnosis of "CHIP" or "ACE"