New app launched to support estimated 175,000 people in the UK with Lynch Syndrome

A new app has been launched to help people living with Lynch Syndrome to monitor and manage their condition, alongside their treating clinicians.  

The app was developed by a collaborative involving the University of Leicester, patients via national charity Lynch Syndrome UK, NHS East Genomics and app developer Instant Access Medical.

The app is designed to support people with Lynch Syndrome through a simple, user-friendly patient clinical dashboard that can be used to focus conversations around approved guidelines and assist interactions with pharmacies and GPs.

Lynch syndrome is an inherited genetic condition that increases the risk of certain cancers, including bowel, ovarian and pancreatic, among others. People with Lynch syndrome are more likely to develop multiple cancers and be diagnosed at a younger age.

In England, around 10,000 people are on the Lynch syndrome register, although it is estimated that 1 in 400 have Lynch syndrome (equivalent to around 175,000 people). Despite this relatively high prevalence, just 5% of people are aware they are living with the condition, making screening and diagnosis a priority for NHS services.

Julien Barwell, Consultant Cancer Geneticist at University Hospitals of Leicester and Professor in Genomic Medicine in the Department of Genetics, Genomics and Cancer Sciences at the University of Leicester, said: “The beauty of this app is that it provides a clear summary of the condition for patients, their doctors and their relatives, and it also has symptom checkers and signposting to other sources of information and support. The starting point for us is lynch syndrome, but in time we hope to develop patient-facing apps for other conditions as well.

“We hope this is the beginning of a trend to link the implications of molecular results to 21^st century healthcare that will be vital to introducing personalised medicine. Key drivers for us are screening based on risk and not just age, treating disease for what it is, rather than just what it looks like, and giving patients the right drug at the right dose, first time, every time.”

 

 

 

Tracy Smith, from Caerphilly, South Wales, was diagnosed with Lynch Syndrome 20 years ago when she was 33 years old. Initially diagnosed with bowel cancer, her oncologist suspected something wasn’t right and suggested she was screened for Lynch Syndrome. The test revealed she had the inherited disorder which then triggered tests for her whole family. Subsequently all three of her siblings, and all her aunts and uncles on her dad’s side have also been diagnosed.

As a Trustee at national charity Lynch Syndrome UK, Tracy was one of several people with Lynch Syndrome to be involved in the development of the app.

Tracy said: “It’s been an absolute delight to work as part of this team. I’m sure this app will be game changing for patients because it is a one-stop-shop for clear information and trusted medical advice. I’m sure it will be very well received received by LS patients across the UK.”

The new app is available to download from the Apple Store and Google Play, although people need to request an access code. Full details on how to receive an access code can be found via the app once downloaded.