The last few years have seen a significant increase in UK health services and research activity that is directly relevant to people with Li Fraumeni Syndrome (LFS). If we include all research and delivered services that directly involve people with LFS, including psychological studies, there is now real momentum in both the number and range of projects and trials. There’s work that involves imaging studies, liquid biopsies, tissue sampling and so on – as well as more patients (but not all, yet) getting annual whole body MRI. However, we have also reached the stage where there is a chance of duplication of effort and of projects competing for access to a limited pool of patients.

As representatives of the LFS community, we’ve started to build a network of researchers and clinicians working in this area. The aims of the Li Fraumeni Network for Clinicians and Researchers (LiNCR – pronounced linker), is to provide a forum for the exchange of information, sharing of ideas, increasing cooperation, and supporting and encouraging further research. It will also be a forum for doctors and other health professional to share best practices and to help roll out new services and trials. It will also aim to deepen the involvement of the LFS community in research, including support for grant applications, production of PPI materials, recruitment for studies and other forms of direct patient engagement.

The success of this initiative, and the shape it ultimately takes, depends on the degree of support we get for the idea from the research and health professional community. So far we’ve had really positive responses and the first conference call has been held – with the involvement of a range of people from across the UK. We plan on organising a face-to-face meeting at some point in 2023.

If you are a health professionala or researcher interested in taking part in LiNCR please contact us to join. If you have colleagues that may be interested and are working, or may work, in this area, please also let us know so that we can contact them as well – our aim is to be as inclusive as possible. ANd of course we’ll be keeping LFS patients and their families fully informed and involved as we progress.