Biosamples for research

Biobanking in the UK

Researchers need to use human tissue or body fluids (biosamples) to study diseases such as cancer – to find out why they start, how they progress, and how they respond to treatment. Patients and the public may be asked to donate biosamples for research as part of a clinical trial or other research project, or to be stored in a biobank for future research use.

There are many biobanks and biosample collections in the UK. It is important that they engage with each other and the wider research community effectively, to ensure that biosamples donated for use in research are used to the best effect.

To help achieve this, the NCRI, together with the Medical Research Council (MRC) worked with other major UK funders to develop a common ‘vision’ for research using human tissue. Since its development in 2011 the ‘vision’ has helped funders, and others involved in biobanking, to direct their efforts in a more coordinated fashion.

» UK Funders’ Vision for Human Tissue Resources, 2011 (PDF)

Confederation of Cancer Biobanks

The NCRI’s Confederation of Cancer Biobanks (CCB) is a consortium of biobanks and biosample collections based in the UK. It was established in 2006 when the number of biobanks was starting to increase and there was a need to encourage greater coordination and promote harmonisation between biobanks – enabling them to share best practice and raise awareness of their collections with researchers. There are now over 30 member biobanks and the CCB assists biobank development by providing advice and mutual support.

» Confederation of Cancer Biobanks (CCB) website

Helping researchers find biosamples for research

The Tissue Directory is the main area of focus for the UKCRC Tissue Directory and Coordination Centre. The purpose of the directory is to capture the UK’s capacity and capabilities in collecting data and samples for the benefit of research. The Tissue Directory is now open for researchers and organisations who are custodians of samples to register their collections and search for sample collections.

» UKCRC Tissue Directory and Coordination Centre (external website)

Making biosamples and data available for research

Without the sharing of biosamples and data, funds would be spent on unnecessary duplication of collection of samples or research. Custodians of biosamples also have an ethical duty to make these available for research and to generate the most knowledge possible for the benefit of progress in cancer research.

To facilitate this sharing, the NCRI developed a template for access policy development. It provides researchers and organisations that hold biosamples with a practical guide to creating a policy that will enable them to share their biosamples with other researchers. The content of the template was informed through consultation with research funders, regulatory bodies and biobanks, as well as researchers, healthcare providers and patient representatives. A template data and material transfer agreement is also included in the document.

» Template for Access Policy development, 2009 (PDF)

» Consultation to develop the Template, 2008 (PDF)

Providing guidance and leadership in biobanking

To provide guidance and leadership in biobanking NCRI has two Pathology Leads; Prof. Andy Hall is NCRI Pathology Lead for Cancer Biobanking and Dr Bridget Wilkins is NCRI Pathology Lead for NHS Engagement in Biobanking.