A jewel of a resource Dr Melanie Oates, Biobank Manager 2011 Nov

A jewel of a resource Dr Melanie Oates, Biobank Manager

Dr Bob Harris, Biobank Assistant Director

Garry Bisshopp, CLLSA

Patients entering the ADMIRE, ARCTIC and some other recent clinical trials of Chronic Lymphocytic Leukaemia (CLL) have been asked to give blood samples to the UK CLL Trials Biobank.

What is this Biobank?

Advances in current treatments generally arise from one of two research areas. One is the clinical trial and the other is the laboratory based scientific study. These scientific studies need a steady supply of samples of CLL and it was agreed amongst clinicians and researchers that a dedicated Biobank for CLL samples was needed. After much work the “UK CLL Trials Biobank” was set up by Professor Pettitt who is also the Director of the UK CLL Forum. This Biobank, supported equally by Leukaemia Lymphoma Research and Cancer Research UK, is independent of clinical trials organisations. It is based within the University of Liverpool and meets all current ethical, quality and safety standards for the long term storage of blood samples and the support of future research.

How does it work?

The samples collected from you for the Biobank are blood, saliva and in some cases bone marrow. These samples are in addition to the samples required by the trials that you are taking part in. This additional amount of blood being taken should not have any adverse effect on you.

The samples are then sent to the Biobank where they are collected, processed and stored by trained and dedicated staff under strict controls. Bar-coded labels and databases are used to keep detailed records of the sample’s whole history from the point of donation to its storage in freezers. These details allow scientific researchers to know the exact condition of each of the samples that they use. The samples are identified by unique references which do not identify the donor. Patient details are retained by your hospital and confidentiality is thereby maintained.

Once samples are stored within the Biobank they are available for use for scientific research. Researchers will

submit a formal request for samples to the National Cancer Research Institute (NCRI) CLL trials subgroup. This subgroup then considers the request on its merits before authorising the Biobank to release samples, or not, for testing. Currently samples are being used for discovery and validation of disease biomarkers which will identify those patients who will respond well to particular treatments and those who will not.

To ensure that samples contained within the Biobank are utilised effectively, and to the maximum, a Governance Committee, with an independent chair, and broad stakeholder representation, including the NCRI CLL subgroup, The UK CLL Forum, the CLL Support Association, Cancer Research UK, Leukaemia and Lymphoma Research and Cancer Research Technology, bi-annually review the Biobank, its operation and its use.

Why should we support the Biobank?

The value of the Biobank and the samples it contains cannot be under-estimated.

Advances in the knowledge and treatment of CLL can only come about by studying all aspects of the disease. The collection and storage of samples from all NCRI clinical trials provides the UK and research staff with a resource the envy of many other countries.

If you as patients wish to see advances in the management and treatment of CLL, initiatives such as the Biobank must be supported and patients should be prepared to donate samples for research. The existence of the Biobank, and your contribution to it, allows us to be at the forefront of such research for CLL.