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 for the past ten years 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 us directly.
You can access a copy of the patient information leaflet (PIL) and consent form by clicking the relevant link below:
- Patients OVER 16 years old:
- Patients UNDER 16 years old:
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.
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 Professor Hall for his expertise and help in getting the National GIST Tissue Bank started.
The following video explains what is involved when donating tissue.
Information for Trusts assisting with donations and researchers seeking tissue samples
Frequently Asked Questions
Q1: Has ethical approval been obtained to do this study?
Yes – The Royal Marsden Biobank is a REC approved Research Tissue Biobank which allows collection from any Trust within the NHS from patients of all ages.
Q2: Is the Biobank covered by an HTA licence?
Yes – Samples are collected under an HTA research licence.
Q3: Will we need to obtain an HTA licence?
No – As long as samples can be transported within 7 days of being made available for research.
Q4: Will I have to obtain informed consent to use the samples in research?
Yes – A full protocol with the necessary forms can be sent on request.
Q5: Will my R&D department need to approve the collection of samples?
No – But they will need to be informed that collection is intended.
Q6: What kind of samples do you need?
Ideally we would like samples of:
● fresh frozen tumour
● a formalin fixed paraffin embedded tissue block with the respective H&E slide
● a whole blood sample collected on the day of surgery
● clinical data
Q7: Will we have to pay for transport?
For patients: No – We will meet all of the costs associated with the transport of your samples to the National GIST Biobank.
For researchers: YES – If you are a researcher requesting tissue for research from the tissue bank. There will be a charge for the retrieval, processing and transport of samples however these are agreed under a MTA.
Q8: What should we do if our hospital already operates a GIST tissue bank locally?
Please make sure to let your clinician know that some of your samples should be collected exclusively for the National GIST Biobank at the Royal Marsden. Your hospital must not store these samples under their local GIST tissue bank and must collect for their own separately.
Contact
Clinicians
If you are preparing to undertake a GIST operation and your patients’ GIST mutation is other than exon 11, please get in touch with The National GIST tissue bank today to ask about donating tissue samples for research gistbiobank@rmh.nhs.uk
Researchers
To apply for GIST Tissue samples for your research project please complete this Application Form (.docx) download and send it to gistbiobank@rmh.nhs.uk
