My name is Emily Berenson and I am a genetic counseling student interested in the psychosocial/emotional impact of the currently recommended Li-Fraumeni syndrome (LFS) cancer/tumor surveillance on both those with a diagnosis of LFS and their family members. With the support of the Li-Fraumeni Syndrome Association, I am conducting an 10-15 minute online survey to learn more about your experiences with LFS tumor/cancer surveillance. Please consider participating if you are over the age of 18 and have a diagnosis of LFS or if you have a family member with a diagnosis of LFS. We also strongly urge you to consider sharing the below survey links with your family members so that they may also have the option to participate in this study. Your thoughts on this important topic are very much appreciated! This study has been approved by the University of South Carolina Institutional Review Board (Pro00091625).
Please use the following link if you have a diagnosis of LFS:
https://uofsc.co1.qualtrics.com/jfe/form/SV_cBEypQQiBrMUha5
Please use the following link if you do not have an LFS diagnosis but have a family member with a diagnosis of LFS:
https://uofsc.co1.qualtrics.com/jfe/form/SV_aVK051GwabcczAh