What to Expect from Study Participation
Those who choose to participate in the NCI Li-Fraumeni Syndrome study will be given questionnaires on their personal medical history, their family history, cancer-related risk factors, and the impact of being in a family in which LFS has been identified. This study (NCI Protocol 78-C-0039) has been reviewed and approved by the NCI’s Institutional Review Board (IRB).
Some participants will be invited to NIH for more detailed clinical/genetic/laboratory studies designed to identify other factors which may contribute to the development of cancer in LFS. It is our hope that by learning more about the types of cancer and genetic changes in LFS we can develop prevention and surveillance strategies which will benefit future families with LFS or those who are at risk of LFS-related cancers.
NOTE: Cancer treatment is not being offered as part of this project. If the need arises, we will discuss treatment options and provide assistance in establishing care with appropriate physicians in or near participants’ home communities. If the NIH has an open study for treatment of an illness that occurs in one of our study participants, and if the study participants appear to be eligible for that study, we will assist in making those referrals as well.