Surveys, Registries, Interviews
Study looking at cancer risk for people with Li-Fraumeni syndrome
Clinicaltrials.gov identifier:NCT04541654
Study Contact Information:
Please contact the study team at (617) 632-4795 or [email protected] or [email protected]
The LiFT UP Li-Fraumeni & TP53: Understanding & Progress Study
Surveys, Registries, Interviews
Study looking at cancer risk for people with Li-Fraumeni syndrome
Clinicaltrials.gov identifier:NCT04541654
Study Contact Information:
Please contact the study team at (617) 632-4795 or [email protected] or [email protected]
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.
This Study is Open To:
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"
This Study is NOT Open To:
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"
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 Contact Information:
Please contact the study team at (617) 632-4795 or [email protected] or [email protected]
Locations:
Massachusetts
City: Boston RECRUITING
Facility: Boston Children's Hospital
Contact Info:
[email protected]
888-733-4662
JUNNE KAMIHARA, MD
City: Boston RECRUITING
Facility: Brigham and Women's Hospital
Contact Info:
[email protected]
617-632-2282
Judy Garber, MD, MPH
City: Boston RECRUITING
Facility: Judy E. Garber
Contact Info:
[email protected]
617-763-8821
Judy Garber, MD, MPH