DONATION study – understanding organ lesions and cancer growth

DONATION study – understanding organ lesions and cancer growth

Project keywords: pancreatic breast prostate cancer, gene alterations, sample donation, post-death

Project Overview

Some people are more likely to develop cancer because of genetic alterations. Additionally key issue for patients is that they present late because they don’t recognise the symptoms and this makes the disease harder to treat. For example, pancreatic cancer has one of the highest mortality rates of all cancers, and Pancreatic ductal adenocarcinoma (PDAC) survival has not improved over the last 50 years. We know that one of the key problems is that people present late with pancreatic cancer, because 5-year survival can be as high as 80% when the disease is caught very early.

This project will take tissue samples to learn more about the changes that occur in and around the cells, and how lesions in organs progress to develop cancer. In this project, we also want to understand how the tumour and cells react once a person dies, so part of this project will ask patients who pass away to donate samples immediately after death to the research programme.

How can you contribute?

We welcome input from cancer patients, family members, and, charities with known genetic alterations. We are particularly interested in hearing from people with pancreatic cancer, although all types are welcome, as long as there is a known genetic alteration such as BRCA.

We would like to hear how you feel about the project, and understand how we can ensure that sample donation after a person has died can be efficient, transparent, and cause no distress for the person’s family and loved ones.

You can contribute in several ways:

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

This project will host regular meetings with, hold in-depth interviews, and help shape up how run the donation process for all patients, including for those who pass away. We will also work with this group to develop materials which tell people about the project, and explain why this work is so important to the general public, NHS trusts, and support groups such as charities.

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

Donate Samples

If you are interested in donating samples, you will need to fit the following basic criteria initially:

• Have a diagnosis of cancer, or have a known genetic alternation
• Have capacity to provide informed consent
• Be well enough to have samples taken via surgery (this is usually takes place alongside your routine case)

OR

• Be able to consent for samples to be taken immediately after death

Even if you fit this criteria, it may be that you are still not able to join the project, so please be aware of this as you will need to discuss it more with a specialist.

Contact information and how to find out more

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

This is not currently funded, and forms part of a bid being submitted to the International Alliance for Cancer Early Detection (ACED). This page will be updated when we know more about the outcome of the bid.