The Leeds Breast Research Tissue Bank - Donor information

The Leeds Breast Research Tissue Bank (LBRTB) was established in 2010 to collect high quality tissue and blood samples to improve the understanding, diagnosis and treatment of breast cancer. Donors have been recruited from patients attending Leeds Teaching Hospitals NHS Trust and samples have been stored securely and lawfully under a licence granted by the Human Tissue Authority. When the tissue bank stopped recruiting in July 2018, more than 2400 participants had consented to donate their tissue with over 19,000 samples collected.

The LBRTB was a founder member of the Breast Cancer Now Tissue Bank (BCNTB), a ground-breaking national network of universities and hospitals working together to provide the UK’s largest collection of patient breast tissue samples. As a member of the BCNTB, the LBRTB was able to support a more varied, larger pool of research projects than would have been possible in isolation. By the end of 2017, the BCNTB had donated over 14,000 samples to researchers for use in 46 different research projects.

Since the BCNTB was reorganised in February 2019, the LBRTB is no longer a partner in that network and formally closed in December 2019.

We would like to extend our gratitute to all donors associated with the LBRTB and BCNTB, who generously consented to provide samples over the years. Some important information for donors is provided below.

What has happened to the samples I donated to the LBRTB?

All of the samples collected by the LBRTB have been transferred to the new operational centre of the BCNTB, in the Barts Cancer Institute at Queen Mary University, London. They will remain available for use in ethically approved medical research, through the rigorous BCNTB application process.

When you donated tissue to the LBRTB, we promised that, in the event that your samples were transferred to one of our partner institutions, they would be held in the same way and to the same standards as they were stored in Leeds. Barts Cancer Institute was also a founder member of the BCNTB, holds a research tissue bank licence issued by the Human Tissue Authority and operates in full compliance with the Human Tissue Act, 2004. You can have complete confidence that your samples are being handled safely and securely, and are only used for appropriate research projects.

How has my personal information been protected?

Your personal data are confidential and protected by law. Your samples were given unique identifying numbers by the LBRTB to ensure that they cannot be linked to you by name or any other personal information. The LBRTB stored some medical information relating to each sample in order to help make the most out of the research done with the tissue but this did not include any information that could identify you personally. This medical data has been transferred with the samples to the new operational centre of the BCNTB. Your personal information has not and will never be disclosed.

What should I do if I no longer want my samples to be used?

When you agreed to donate we promised that you have the right to withdraw your consent at any time, without giving a reason. This a legal right and still applies under the new organisation of the BCNTB. If you do wish to withdraw, then please contact: leedsth-tr.PRS@nhs.net

If you tell us that you wish to withdraw, a member of staff from the Leeds Teaching Hospital Trust will inform a colleague at the BCNTB of your decision. Your specimens will be discarded in a lawful manner and any data relating to you will be permanently deleted from the tissue bank records. When this process is complete you will be provided with a written letter of confirmation.

As we noted in the information provided to you at the time of donation, if you withdraw your consent a long time after donating, some of your samples and data may already have been used for research and contributed to new knowledge that is in the public domain. We cannot recall samples or information that have already been used but no further research using your tissue will be allowed.