NCI is studying the clinical characteristics of individuals with LFS and their family members in NCI protocol 11-C-0255. We are also conducting genetic counseling and clinical TP53 mutation testing for these families. While it is possible that participants in our study may personally benefit from their role in this study, we cannot assure that this will be the case. Our overall goal is to develop the evidence that will lead to the creation of more effective cancer prevention and risk-reducing strategies for future LFS family members.
Individuals and their family members with known mutations in TP53 or fulfilling the study eligibility criteria may enroll in the study.
Eligibility Criteria for Participation
- A family or personal medical history of neoplasia consistent with the diagnosis of LFS or LFL (Birch definition); OR
- A personal history of a germline TP53 mutation; OR
- A first- or second- degree relative of a TP53 mutation carrier, regardless of mutation status; OR
- A personal history of three or more LFS-related primary cancers; OR
- A personal history of adrenal cortical carcinoma or choroid plexus carcinoma at any age, regardless of family history.
Persons interested in learning more about the LFS study and determining whether they might be eligible to participate are encouraged to contact the research team by phone (1-800-518-8474) or email.
If you or your provider has questions regarding the nature and purpose of this study, and wish to speak directly with one of our team clinicians, please contact Dr. Payal Khincha, by phone (240-276-7267) or email.