LFS Register for the UK


We do not know how many people with Li Fraumeni Syndrome (LFS) there are in the UK.

However, as of July 25th 2023, we do know that there are 9,030 people in the UK with Lynch Syndrome, another cancer predisposition syndrome like LFS. Not only do we know how many, we know what sex they are, where they live and what gene variants they have. And if we wanted to know those numbers for today, we’d be able to get them fairly easily.

How is that we can know these things about Lynch and not LFS? All of this is down to the English National Lynch Syndrome Registry (ENLSR) – a fantastic resource for people with Lynch, for the doctors that treat them, for surveillance and for scientists looking into the syndrome. What’s more every time someone is diagnosed with Lynch syndrome they are added to the registry. This is information not just for the sake of knowing, but it links to the management of Lynch and the testing that each person needs – it’s a clinical tool not just a database.

And it’s what we desperately need for LFS too. At the moment we only have a rough idea of how many people in the UK have LFS, and an even rougher idea of where they are and how they are managed. This is how it’s been for too long, and it’s about time that this changed.

The good news is that following the success of the Lynch registry, there are now moves to add more cancer predisposition syndromes into registries. LFS is going to be one of the first – but unfortunately it’s not an easy job to complete. It means that there has to be work done to search through the records of the different cancer genetics clinics to collate the data on who’s currently diagnosed. That data is in different formats and there may be all kinds of duplications and missing records. Once that’s all cleaned up the records have to be migrated to the new database and then doctors have to switch over to using the new system rather than their existing spreadsheets or databases. The data can also be linked to other medical records, cancer registries etc. It’s a big task – but essential.

The end point is to have a national registry that can track people, add the newly diagnosed, link to whole-body MRI provision and clinical trials. Researchers will have access to accurate data so we can start to get answers to the questions we’ve never been able to answer.

The National Disease Registration Service, part of NHS England, is the body that is taking this on – and we are more than happy to support what they are doing in every way we can.

  1. Samantha Whyte
    | Reply

    This is especially essential for people who are starting new families like my self it’s safer to know you have the gene than assume your fine and your family line has nothing too do with you
    More people that know about LFS the more chance we have of getting better funding to find better ways to mange this

Leave a Reply

Your email address will not be published. Required fields are marked *