Developing a risk estimation tool for hereditary cancers in children and young people

Developing a risk estimation tool for hereditary cancers in children and young people

Keywords: paediatric cancers, hereditary disease, risk estimation, gene alternations, genomics

Overview

Child cancers are uniquely emotive, and hereditary disease is an issue which affects the whole family. Our genetic make-up forms a large part of who we are as people, but for some people this carries a risk to developing cancers. However, we do not have a good understanding of risk of developing cancers when a person has a gene alteration which is linked to cancer.

This project aims to do population modelling to build a tool which gives clinicians, patients, and their families a better idea of risk to developing disease, and aims to build a set of supports to help navigate your understanding of genomics and what pathways may be open to you to monitor and mitigate those risks.

How can you contribute?

We welcome input from families, children, and young people with know genetic alterations who are interested in giving their views and opinions about how we can make this project a success. You could also be part of a charity supporting people with hereditary genetic alternations, or a clinician who is interested in giving specialist clinical feedback.

You can contribute in several ways:

Join the Patient and Public Involvement and Engagement (PPIE) network

This project will host regular 6-monthly meetings with PPIE groups, hold in-depth interviews, and help shape up how we share the tool once it has been developed. This group will also help to develop materials which can be shared with charities, NHS trusts, and support groups who can ensure that as many people know about the tool.

Join the User Design Advisory group

When we develop the tool, we will need to know that the information is helpful, relevant, and presented in a way which is helpful to the patient and their families. Throughout this project, you will have the opportunity to contribute in a range of ways to ensure that we get the messages right.

• Meetings take place every 6 months and last around two hours.
• Members may also occasionally be asked to review short research summaries or provide feedback by email.

No scientific background is required. Lived experience and perspectives are what matter most.

Contact information and how to find out more

• Ariadna Fuertes Gassio – for general information
• Simon Reeds PPIE specific information

This project is a collaboration between researchers in Manchester, and the Institute of Cancer Research in London.

This is not currently funded, and this page will be updated if the CRUK grant is successful.