Governance - Mesobank

Samples are procured from living patients at NHS sites in the UK which are regional specialist centres for Mesothelioma treatment. Samples procured from these centres are processed on site and stored using local HTA licensed storage facilities or in some cases, sent directly to researchers requiring fresh tissue.

Patient data is entered onto a web based Mesobank database by identified staff within the specialist centre. Batched processed samples from each site are transported by couriers to the central storage facility from where they can be dispatched to researchers. A Supply Agreement is in place between each donor site and the Royal Papworth Hospital NHS Foundation Trust (lead site), and an Individual Project Agreement is in place between the Royal Papworth Hospital NHS Foundation Trust and the central storage facility (Advent Bioservices Ltd).

Standard Operating Procedures are in place for sample procurement, processing and storage at each donor site and for the entry of clinical data onto the web-based database. Mesobank use third party laboratories for isolation of DNA and the creation of cell lines and ensure that Material Transfer Agreements are in place prior to samples being transferred to these centres of expertise. Specialist courier services are used to transport samples from donor sites to third party laboratories for processing or to the central storage facility.

Mesobank is fully compliant with the Human Tissue Act 2004. Codes of Practice are available to all staff and form the basis of SOPs regarding the acceptance of donated tissues to the tissue bank, documented consent, tracking, storage and disposal.

All fresh frozen tissue, pleural fluid and blood samples from living patients accepted into Mesobank have documented evidence of fully informed consent. Samples without this documentation will be subject to disposal if evidence of consent cannot be provided to the tissue bank. Mesobank also has Research Ethics Committee approval to collect pleural biopsy tissue taken from Mesobank donors, that is surplus to diagnostic need, and stored in local hospital archives in Formalin Fixed Paraffin Embedded (FFPE) blocks. These samples are not taken as part of the standard Mesobank procurement process.

This privacy notice explains how Royal Papworth Hospital NHS Foundation Trust processes the personal data of individuals who take part in research studies conducted by us.

As a NHS organisation we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to donate your tissue to the Mesobank Research Tissue Bank, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

Our Data Protection Officer is Cath Willcox and you can contact her at cathwillcox@nhs.net.

The Participant Information you will be given as part of the research project will tell you what types of personal information we will use in connection with the specific research study or project you are participating in and (where applicable) its sources and how your data will be shared.

For more information on how Mesobank collects and uses your personal data, please click on the study documents below:

Participant Information Sheet

GDPR Patient Statement

For more general information about how patient information may be used for research, please go to https://www.hra.nhs.uk/information-about-patients/