As has been repeatedly shown in studies, including the UK SIGNIFY study in 2017, annual whole-body MRI (WBMRI) can detect cancers early, when they are more treatable, for people with Li Fraumeni Syndrome (LFS). While it has been recommended for people with LFS in the UK, access is patchy across different parts of the NHS – a topic which we have been highlighting for some time now.
The SIGNIFIED project aims to add to the evidence on the value of WBMRI for people with LFS. It will generate data on changes in the quality of life for people with LFS receiving WBMRI, as well as being used to create a model to show that WBMRI is cost-effective and feasible across the whole of the NHS. The study aims to recruit 50 LFS patients over the next 3 months, and to offer them WBMRI, once at the start of the study and a follow-up 12 months later. Participants, who should not have had cancer in the previous 5 years, will also be asked to complete a health questionnaire at each of their scans. The study is based at the Royal Marsden Hospital, but potentially participants may take part in other centres if not close to London.
This study offers an opportunity for participants to gain access to WBMRI, and to help in providing the evidence to support the roll-out of WBMRI across the whole country. If you are interested in taking part, please contact Dr Elena Cojocaru (Elena.cojocaru@rmh.nhs.uk).
Kirsty Huddleston
Hi all, I’ve recently been told I have the tp 53 gene fault and that I created it myself as a embrio. I have now had a whole body MRI ( 8 weeks ago, no results yet) is this part or the same project?. I haven’t had any kind of contact from the genetics center I’ve basically just googled everything. I’m under Mr Evans at st Mary’s Manchester.
Any information regarding the Metformin trial would be welcome. I have been told I will be getting annual mri’s.
Pan
Hi Kirsty. It’s most likely that the WBMRI you’ve had is part of the routine surveillance and not part of this project. If you like we can contact the SIGNIFIED team and they can follow up directly with you? Just give us the say so. As well as the SIGNIFIED project there are a number of other research projects going on in LFS in the UK – the LiFTS study (http://www.tp53.co.uk/2022/03/20/lifts-study/) and the MILI trial (http://www.tp53.co.uk/2021/11/22/mili-trial-funding-approved/) for example – with more on the way.
Kirsty Huddleston
Would all the trails be based in London, travel would be an issue for me I’m afraid. Xx
Pan
No, these trials and projects are national – though it may mean some travel to the big centres like Manchester, the Royal Marsden etc. For the MILI (metformin) trial we (the TP53 Trust) have put money aside to help any participants who need assistance with travel costs.
Kirsty Huddleston
Yes, I’m interested in helping the SIGNIFIED study.
Thankyou
Kirsty xx