For Patients

What is a biobank?

A biobank is a collection of tissue samples donated by patients which are stored for use in research. Samples are taken during a medical procedure (such as a blood test or biopsy) and are analysed by scientists to find better ways to diagnose, prevent and treat cancers and other blood disorders in the future. Samples donated are classed as ‘extra material’ and are not needed for diagnosis or treatment.

How to participate

We would like to invite patients with blood disease to participate in biobanking whenever it is appropriate, during their clinical journey.  Patients who attend hospital for investigation or follow up of a suspected or known haematological disease will be invited through letter, text or e-mail, from a biobank representative (a clinician, specialist nurse or research nurse) to discuss research biobanking in person, by telephone or video call. If you would like to participate in biobanking but have not yet been approached, please ask your healthcare provider at your next appointment.

Some patients may be invited to donate to the biobank at their clinic appointment. Patients may also be invited to donate at the same clinical encounter where the sample is being collected for clinical reasons, provided that sufficient time is provided for the patient to fully understand information about the biobank and to provide fully informed consent. You can find a copy of the Patient Information Sheet here and consent form here.

Samples collected, storage and use

The King’s College Denmark Hill Haematology (KCDHH) biobank focuses on collecting samples from patients receiving their main clinical care at King’s College Hospital (KCH) and referring hospitals, including material sent to the South East Haematological Malignancy Diagnostic Service (SE-HMDS) which are surplus to diagnostic requirements. Samples are stored in liquid nitrogen tanks and freezers at the Rayne Institute, Denmark Hill.

We collect samples from adult and paediatric patients with haematological diseases, including but not exclusively, haematological cancers (including leukaemia, myeloma, lymphoproliferative and myeloproliferative disease), bone marrow failure syndromes (including aplastic anaemia, inherited bone marrow failure syndromes) and haemoglobinopathies (including sickle cell anaemia and thalassaemia). We also collect tissue samples from healthy individuals as these can be useful as ‘controls’ in research. You can find a copy of the healthy donor information sheet here.

Donated samples will be used for studies that add to our knowledge about disease initiation, progression or treatment. Studies may involve:

• The use of large numbers of tissue samples collected from different patients (e.g. to discover biomarkers or other biological characteristics of a disease)
• Samples collected from a cohort of patients at multiple time points during the course of disease and treatment (e.g. to discover changes to the disease during and after treatment, or to find out why diseases develop resistance to treatments)

Patient data

The biobank will collect patients’ demographic and clinical data, including laboratory test results and details of treatments received by patients. Patient details and clinical data are logged on secure databases by designated and trained members of the Biobank team. Each patient is allocated a unique Biobank Patient ID which is then used to identify the patient in the first and any future encounters. Any patient data that is subsequently provided to researchers is fully anonymised. Personal identifiable information is never released to researchers. Read more about how your data will be used.

Benefits

Whilst donating samples to the biobank will not have any benefit to you directly, your samples will be used in research to improve our understanding of causes of Haematological disease, to discover and test potential new clinically useful diagnostic tests and new treatments with the aim of improving patient care in the future.

Current research projects using the biobank

We currently have several research groups from King’s College London (KCL) and KCH who have active projects with the biobank, researching the following disease areas: myelodysplastic syndromes, acute myeloid leukaemia, multiple myeloma, acute and chronic lymphocytic leukaemia, B-cell lymphoma and mantle cell lymphoma.

Feedback

For any queries or concerns, please email the biobank at kch-tr.kcdhhbiobank@nhs.net  

FAQ

Who will have access to my data and how will it be handled?

Your data will be recorded on secure databases by designated and trained members of the biobank team. From time to time some data may be requested by researchers. Any patient data that is provided to researchers is fully anonymised. Personal identifiable information is never released to researchers.

Will donating samples to the biobank affect my treatment?

Donating samples to the biobank will not affect your treatment.

Will my genetic data be used by commercial companies?

It is possible that commercial companies may collaborate with King’s College London on genetic research projects. In these instances, your genetic data may be used by commercial companies, however it is important to remember that all samples released for research projects are fully anonymised.

Can I find out what research my samples have been used in?

Whilst we are unable to provide feedback on specific research studies your samples have been used in, the examples below will give you an insight into the sort of research your samples could be used in.

• Ectopic humanized mesenchymal niche in mice enables robust engraftment of myelodysplastic stem cells (2021)
• Gene-edited healthy donor CAR T cells show superior antitumour activity compared to CAR T cells derived from patients with lymphoma in an in vivo model of high-grade lymphoma (2021)

What happens to my samples after I die?

Your samples and data will still be made available to researchers after you die, but this is discussed when you choose to donate samples to ensure you make a fully informed decision.