The National GIST Biobank

Donate your tissue to support essential research

National GIST Biobank

The National GIST Biobank is based at the Royal Marsden, Centre for Molecular Pathology in London.

Access to primary clinical samples (tumour and a whole blood sample) is vital for research into rare tumours such as GIST.  We have been working to collect samples since 2012 and with your help we can continue to develop this valuable resource.

We already have sufficient samples of GISTs with the exon 11 mutation but are looking for further samples of all other types of GIST.

Information about donating tissue

If you would like to donate your tissue samples to the National GIST Biobank and your GIST type is other than Exon 11, please contact gistbiobank@rmh.nhs.uk in prior to your operation to make arrangements for your tissue to be donated. N.B. GIST is rare and not all hospitals will be familiar with the existence of the National GIST Biobank, so please do contact them directly and they will explain to your hospital what is involved.

You can access a copy of the patient information leaflet (PIL) and consent form by clicking the relevant link below:

More information explaining the terminology and principles related to donating samples can be found here.

What does the Biobank do?

Specialist tissue managers coordinate the collection, storage and distribution of GIST samples according to strict procedures and ethical guidelines, lead, by Professor Robin Jones. Working in collaboration with pathologists, medical oncologists, surgeons and other hospital personnel, specially trained staff obtain patient consent, collect samples and assemble pseudonymised clinical data (data which protects privacy) about each donor and their corresponding specimens.

The following video explains what is involved when donating tissue

Background

The National GIST Biobank was initially conceived as part of the work to create the PAWS-GIST clinic in the UK.  The tissue bank evolved to enable research teams considering work on all types of GIST to have a central place to access the rare material they need.

Professor Andrew Hall, who was then the Director of the Northern Institute for Cancer Research, worked collaboratively with GIST Patient advocate Jayne Bressington to gain ethics committee approval to set up the Biobank. As a result a variety of rare paediatric and adult GIST biospecimens including fresh, frozen and paraffin embedded tissue, in addition to blood samples and clinical data are now available to anyone with a good quality research proposal.  We are eternally grateful to Andy and Jayne for their work in getting the National GIST Biobank started.