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Information for Patients

The participation in this research project is entirely voluntary.

Reason for this research project:

Pancreatic diseases can be very difficult to diagnose and monitor because of the location of the pancreas deep within the abdomen. Also, with the current range of tests it may not be possible (in some cases) to tell the difference between pancreatitis (inflammation of the pancreas) and other conditions such as cancer of the pancreas without surgery and direct biopsy of tissues from this organ. This project is aimed to create a research tissue bank (explained below), specifically for pancreatic diseases. It will help researchers conduct a range of investigations in the near future. Thus this research project aims to develop new diagnostic tests as well as treatments for patients with pancreatic disease.

What is a Research Tissue Bank?

This project is a research tissue bank. A research tissue bank collects a range of samples, along with relevant medical information, from patients with diseases, as well as those without the disease, to enable future research. All samples are anonymised by giving an unique ID number. This unique ID number will enable researchers to group people with similar conditions without identifying an individual. The samples collected are used in a number of ways to develop new tests, understand the disease process and then to develop new treatments. There are a number of safeguards put in place so that only approved research is carried out. Thus, an independent Tissue Access Committee made up of scientists, doctors, nurses and patient representatives decides how samples will be used now or in future. Some samples will be used immediately for research purposes. Other will be stored in an anonymised manner, in conditions which preserve them, for future use.

A wide range of research is envisaged. Examples include developing and testing a single or combination of proteins (biomarkers) to diagnose pancreatic diseases with a high degree of precision. Other investigations may be done to unravel novel genetic mechanisms of the pancreatic diseases studied and/or develop new treatment strategies. These can be analysed not only from tissues but also from urine / blood / saliva samples. Some samples will be used for genetic analysis. Some tissues will be used to create live cancer and other type of cell lines.

It is likely that some samples may be stored indefinitely to enable future research with new technologies not yet developed. In order to facilitate rapid and best research, these samples and information may be shared with researchers anywhere in the world. Whilst it is important that researchers are able to link the sample information with medical information, all individuals will be anonymised. You will not be personally identified or approached by these researchers.

Copyright © 2015 Queen Mary University of London and Pancreatic Cancer Research Fund