Research Involvement Network opportunity: Provide input into a funding application focussing on Cachexia (weight loss and poor appetite) for a Pancreatic Cancer Grand Challenge

Type of opportunity

Members of the Research Involvement Network are invited to contribute to discussion as part of a focus group taking place 1-3pm Tuesday 6th April. The purpose of the focus group is to give people affected by pancreatic cancer the opportunity to provide meaningful feedback and insight to the researchers leading the study. This is an important part of the research process and helps to ensure that the research being conducted is relevant to the needs of people affected by pancreatic cancer.

Focus groups will be conducted virtually, via Zoom videoconferencing and should last no longer than two hours.

If you prefer not to take part in a focus group there is also an opportunity to complete an online questionnaire.

About the study

Many people with pancreatic cancer suffer from a devastating syndrome termed cachexia.  This is characterised by significant weight loss from both loss of muscle and fat, and poor appetite, that can’t be reversed by food intake or nutritional support.  These symptoms are often accompanied by fatigue, being less active and a gradual decline in overall health.  Cachexia is not well understood and, without understanding how pancreatic cancer causes this effect on tissues outside of the pancreas, we have little chance of developing novel approaches that would reverse or prevent cancer cachexia and improve survival and quality of life in people with pancreatic cancer.

Cancer Research U.K. and the National Cancer Institute in the U.S. have partnered to fund an international team of investigators to study cancer cachexia through their Cancer Grand Challenge scheme. Researchers from the University of Edinburgh and Indiana University are putting a proposal forward focussing specifically on pancreatic cancer in the hope of being awarded the funding. Before the proposal is submitted, Pancreatic Cancer UK and the Pancreatic Cancer Action Network have joined the team of investigators to bring insight from people affected by pancreatic cancer to the basic, translational, and clinical research being proposed to ensure it is both important and relevant to patients.

How will the study benefit people affected by pancreatic cancer?

Loss of weight, poor appetite and decreasing overall activity – cancer cachexia – is the main symptom affecting people with pancreatic cancer. We have no treatment for this and we do not fully understand why this happens. Understanding the cause of cancer cachexia would open the door for the development of novel interventions which could improve the treatment, quality of life, and survival of pancreatic cancer patients meaning that they can spend more time with their loved ones.

What will happen in the study?

A team of researchers will look at different aspects of cancer weight loss and pancreatic cancer. In the past cancer research has focussed on the tumour rather than the person, whereas weight loss research in cancer has focussed on the person and not the tumour. The team will look at the tumour and the person together to see if they can better understand how the cancer causes weight loss but also how this can vary between people.

They will look at data collected from people with pancreatic cancer and look at various aspects. This will include genetics, how much muscle and fat they have, how they process food and nutrition (metabolism) and also how weight loss is influenced by treatments.

They will also do a lot of experiments including in cells and models which act like human pancreatic cancer to see if they can understand more. These different ideas are grouped into specific areas called work packages and different experts will lead these.

Why do we need to involve people affected by pancreatic cancer in research?

This work starts with people with pancreatic cancer and we want it to end with better treatments for people with pancreatic cancer. So far people affected by pancreatic cancer haven’t really been involved in research about weight loss . If the researchers can work alongside people with lived experience of the disease more this will help to ensure that any research that is done will be beneficial for people with pancreatic cancer and can also help raise awareness of what cachexia is and how it can effect patients and their loved ones.

How are the researchers proposing to involve people affected by pancreatic cancer in this work?

At this stage the researchers want to explain what they are doing and get feedback on different aspects of the work.

If funded, they also want to get several people to be part of the research team to help them develop their work so it is the best outcome for patients.

Who is drafting this proposal and leading the focus group?

The work is being led by Professor Teresa Zimmers (Indiana University) and Dr. Barry Laird and Dr Richard Skipworth (University of Edinburgh).

When will this opportunity be taking place?

Please express your interest in attending the focus group by no later than Thursday 1st April 2021.

The focus group will take place 1-3pm Tuesday 6th April 2021.

Who can take up this opportunity?

This opportunity is aimed at anyone who has been affected by pancreatic cancer (any member of the Research Involvement Network).

What steps will be taken to ensure that information about participants is stored and used in compliance with the provisions outlined in the General Data Protection Regulation (GDPR)?

Data will be kept on a password protected computer. Any personal data will only be used for the purposes of this project. Focus groups will be recorded, and transcribed verbatim. Recordings will be deleted following transcription.

What next/who to contact:

Please send your expressions of interest for the focus group to the Pancreatic Cancer UK Research Team.

Alternatively, you can complete the online questionnaire here.