National GIST Tissue Bank
The National GIST tissue Bank 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 this rare material.
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 a National GIST tissue bank in the UK. 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.
In 2017, the National GIST Tissue Bank transferred to its permanent home at the Royal Marsden, Centre for Molecular Pathology in London.
Here, 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.
Access to primary clinical samples (tumour and a whole blood sample) is vital to progress the understanding of rare tumours such as GIST. With your help we can continue to develop and spread the word about this valuable resource supporting GIST cancer research locally, nationally and internationally.
Research will progress faster if there is a good supply of GIST tissue upon which to test potential treatments and develop new diagnostic tests.
Information for patients about donating tissue
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 below:
- Patients OVER 16 years old:
- Patients UNDER 16 years old:
If you are preparing to have an operation and your GIST type is other than Exon 11, please contact email@example.com and copy firstname.lastname@example.org or phone 02078118395 in good time to make arrangements for your tissue to be donated to the National GIST Tissue bank.
N.B. GIST is rare and not all hospitals will be familiar with the existence of the National GIST Tissue Bank, so please do contact us directly.
More information explaining the terminology and principles related to donating samples can be found here.
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 Tissue Bank.
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 Tissue bank at the Royal Marsden. Your hospital must not store these samples under their local GIST tissue bank and must collect for their own separately.
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 email@example.com
National GIST Register
On 1 October 2021, responsibility for the National Registration and Analysis Service (NCRAS) transferred from Public Health England (PHE) to NHS Digital.
We work with the National Cancer Registration and Analysis Service (NCRAS).
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.
GIST Cancer UK and the PAWS GIST team, GIST clinicians and pathologists, are 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.
The following slides were prepared by the National Disease Registration Service (NDRS) Molecular and Genomics analytical team for the years 2016 – 2020: