National GIST Tissue Bank

Background: The Human Tissue Act 2004

The Human Tissue Act 2004 regulates activities concerned with the removal, storage, use and disposal of human tissue. The act was passed as a reaction to events at Alder Hey Children's Hospital, where body parts and tissue samples from deceased children had been retained without asking the relatives.

Hospitals will normally be registered under the Act, and there will no problem when a hospital takes tissue samples from a patient and uses them to assist in the patient's diagnosis and treatment. However, problems may arise if the hospital (or other research organisation) wants to use the material retrospectively for general research into treatment pathways, particularly when the material belongs to a patient who has died. Among other things, the Act creates a specific offence of "DNA theft". This raises potential problems for a researcher who wants to do mutation analysis on tissue from deceased patients, unless there is a signed and witnessed statement of consent from the owner of the tissue.

How you can help: National GIST Tissue Bank

As part of the effort to create our PAWS-GIST clinic in the UK it was concluded that a National GIST tissue bank would be needed so that any research team considering work on GIST can have a central place to apply for this rare material.

Professor Andrew Hall, Director of the Northern Institute for Cancer Research, prepared and submitted a proposal to the ethics committee to set up a National GIST tissue bank and was given approval. In future these rare samples (fresh, frozen and in paraffin blocks in addition to other relevant materials can be stored for use in research programmes and we are eternally grateful to Professor Hall for his expertise and help in getting the National GIST Tissue Bank started.

The Royal Marsden, Centre for Molecular Pathology in London UKIn 2017, the National GIST Tissue Bank transferred to its permanent home at the Royal Marsden, Centre for Molecular Pathology in London. 

Access to primary clinical samples (tumour and matched normal blood) is vital to progress our understanding of rare tumours such as GIST. With your help we can grow a national collection of samples available to anyone with a good quality research proposal. This bank is a valuable resource that supports GIST cancer research locally, nationally and internationally. It provides researchers with a diverse selection of high quality GIST tumour specimens and clinical data obtained by dedicated tumour bank staff who follow strict procedures and ethical guidelines.

Research will progress faster if there is a good supply of GIST tissue upon which to test potential treatments and develop new diagnostic tests. Hosted by The Royal Marsden in London, the National GIST Tissue Bank coordinates the collection, storage and distribution of a variety of paediatric and adult biospecimens including fresh, frozen and paraffin blocks in addition to blood samples and clinical data.

Working in collaboration with pathologists, medical oncologists, surgeons and other hospital personnel, specially trained staff obtain patient consent, collect samples and assemble clinical information about each donor and their corresponding specimens.

Please try to assist in this research by sending samples to the National GIST biobank.

If you would like to donate your tissue samples to the National GIST Tissue bank and aid research into GIST cancer please find a copy of the patient information leaflet (PIL) and consent form by clicking the relevant link following:

Patient Information Leaflet & Consent form for over 16 years old

Patient Information Leaflet & Consent form for under 16 years old

If you are planning to have an operation, please contact Jayne Bressington at in good time to make arrangements for your tissue to be sent to the National GIST Tissue bank.

National GIST Register

GIST Cancer UK works with the National Cancer Registration and Analysis Service (NCRAS).

NCRAS is currently part of Public Health England and is moving to NHS Digital in October 2021.

NCRAS uses data provided by patients with cancer and collected by the NHS in England as part of their care and support. NCRAS uses this data to detect changes in the health of the population and to help the NHS and researchers improve the diagnosis and treatment of cancer.

NCRAS registers tumours, including gastrointestinal stromal tumours (GISTs). It uses the International Classification of Diseases for Oncology (ICD-O) system, which is specified by the World Health Organization (WHO).

Since 2016, NCRAS has been collecting and recording molecular diagnostic tests on tumours. This includes mutational status information for GIST cancer patients.

Members of our Medical advisory board have been working with NCRAS to understand the molecular sub-groups of GIST. Information from NCRAS supports our research and develops our clinical understanding of these rare tumours.