I am happy to be in a position to confirm that a new UK study will look at active surveillance for Li Fraumeni Syndrome patients. The SIGNIFY study, which is now at the final stage of approval, is being run by the Institute of Cancer Research and will initially be available at two centres, Manchester and the Royal Marsden. The protocol will look at the effectiveness of annual whole body and brain MRI scans in confirmed LFS patients. A secondary part of the study will look at the psychological impact of screening.
Recruitment to this new study hasn't started yet, and there is a possibility that it may change slightly before it gets complete approval. As soon as the trial is confirmed and we have some more concrete information details will be posted here. The people running the study are in touch with the George Pantziarka TP53 Trust and will keep us informed.
Aside from anything else, this is a good example of how the forum on the Trust's web site is turning into a valuable tool. The first mention of the proposed trial surfaced there last week, and now we have official confirmation. Thanks to all those who first raised the alert.