Over the past several 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 is work that involves imaging studies, liquid biopsies, tissue sampling etc. – as well as more patients (but not yet all) getting annual whole body MRI. However, in 2023 we recognised that there was a chance of duplication of effort and of projects competing for access to a limited pool of patients.
Consequently, we began building a network of researchers and clinicians working in this area. The aims of the Li Fraumeni Network for Clinicians and Researchers (LiNCR – pronounced linker), are to:
· Enable the exchange of information and sharing of ideas
· Increase cooperation
· Provide a forum for doctors and other health professional to share best practice and to help roll out new services and trials
· Support and encourage further research
· Deepen the involvement of the LFS community in research, including support for grant applications, production of patient and participant facing materials, recruitment for studies and other forms of direct patient engagement
Our first conference call resulted in very positive responses, with the involvement of a range of people from across the UK.
In May 2024, we held our first LiNCR national conference, kindly funded and hosted by the University of Oxford Cancer Centre. It was a successful day, with a full programme of speakers and presentations, as well as room for discussion and networking throughout the day.
Our next conference will take place in May 2026, again hosted by Oxford.
If you are a health professional 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.