
Research: GIST Cancer UK funded research projects/awards and other GCUK associated projects.
GCUK is focused on stimulating research to improve treatments and find a cure for GIST cancer.
This aim is only made possible with the funds raised by our supporters and the dedicated researchers who work with us.
Wildtype SDH Deficient GIST in the UK; A review of clinical course, genetics, epigenetics and metabolomics.
Principal investigator (PI) - Dr Ruth Casey
Funding awarded by GCUK from the PAWS-GIST Research fund - £60,000
Project Duration - 3rd January 2017 to 31st December 2020.
Research outputs: Dr Casey's research papers were published in PubMed as follows:
2017 - SDHA related tumorigenesis: a new case series and literature review for variant interpretation and pathogenicity. https://pubmed.ncbi.nlm.nih.gov/28546994/
2018 - Translating in vivo metabolomic analysis of succinate dehydrogenase deficient tumours into clinical utility. https://pubmed.ncbi.nlm.nih.gov/30949620/
2019 - SDHC epi-mutation testing in gastrointestinal stromal tumours and related tumours in clinical practice. https://pubmed.ncbi.nlm.nih.gov/31308404/
2020 - A review of the tumour spectrum of germline succinate dehydrogenase gene mutations: Beyond phaeochromocytoma and paraganglioma. https://pubmed.ncbi.nlm.nih.gov/32686200/
2021 - Familial wild-type gastrointestinal stromal tumour in association with germline truncating variants in both SDHA and PALB2. https://pubmed.ncbi.nlm.nih.gov/33854214/
Next generation sequencing of WT GIST's to identify therapeutic targets.
Principal investigator (PI) - Dr Newton Wong
Funding awarded by GCUK from the PAWS-GIST Research fund- £15,389
Project Duration - 1st July 2017 - June 2020
Research outputs: June 2020 - Dr Wong’s research paper “Next generation sequencing demonstrates the rarity of short kinase variants specific to quadruple wild type gastrointestinal stromal tumours”. Was published in the Journal of Clinical Pathology
http://dx.doi.org/10.1136/jclinpath-2020-206613
SSGXXII Scandinavian 3 versus 5 years adjuvant imatinib study - funding to extend the UK arm of this trial for further years enabling the recruitment of additional UK GIST patients to this Europe wide study.
Principal investigator (PI) - Dr V.Ramesh Bulusu
Funding awarded by GCUK - £94,963.75
Project Duration - 1st April 2019 - September 2023
Research outputs: TBC
Research to investigate the potential of Gallium-68 (68Ga) DOTA-conjugated peptidePET/CT to develop theranostic applications in wild-type gastrointestinal stromal tumours (GISTs).
Principal investigator (PI) - Dr Ruth Casey
Funding awarded by GCUK from the PAWS-GIST Research fund- £21,000
Project Duration - Starting in 2019
Research outputs: Dr Casey's resarch paper was published in PubMed as follows:
2021 - The role of [ 68 Ga]Ga-DOTATATE PET/CT in wild-type KIT/PDGFRA gastrointestinal stromal tumours (GIST). https://pubmed.ncbi.nlm.nih.gov/33443647/
Investigating the utility of serum miRNA as a tumour biomarker to guide surveillance in patients with dSDH GIST and PPGL.
Principal investigator (PI) - Dr Ruth Casey
Funding awarded by GCUK from the PAWS-GIST Research fund- £76,886
Project Duration - 2020 - December 2023
Research outputs: Preferential MGMT hypermethylation in SDH-deficient wild-type GIST
https://pubmed.ncbi.nlm.nih.gov/36198483/
Pilot Study - Altered RNA methylation in SDH deficient gastrointestinal stromal tumours
Principal investigator (PI) - Dr Olivier Giger
Funding awarded by GCUK from the PAWS-GIST Research fund- £7,000
Project Duration - March 2019 - September 2019
Research outputs: Preferential MGMT hypermethylation in SDH-deficient wild-type GIST
https://pubmed.ncbi.nlm.nih.gov/36198483/
Investigating the potential of deuterium metabolic imaging in SDH-deficient GIST
Principal investigator (PI) - Dr Mary McLean
Funding awarded by GCUK - £20, 475
Project Duration - October 2023 - September 2025
Research outputs: TBC
Collection of GIST tissue samples stored in hospital pathology departments for patients who had been treated at the Marsden over previous years, then retrospectively undertake mutational analysis of all the samples.
Principal investigator (PI) - Professor Ian Judson
Funding awarded by GCUK - £20,000
Project Duration - Commenced 2016
Research outputs: Professor Judson's resarch paper was published in Cancer Biology & Therapy as follows:
2016 p.(L576P) -KIT mutation in GIST: Favorable prognosis and sensitive to imatinib?
https://www.tandfonline.com/doi/full/10.1080/15384047.2016.1156263
Professor Judson is excited to report that with GIST Cancer UK’s help, he and his team managed, to “accumulate a database of clinical and mutational analysis information on 550 GIST patients”. This material will form the basis for a research project, in collaboration with other groups, looking at the incidence and prevalence of different mutational subtypes and their influence on response to tyrosine kinase inhibitors and the development of resistance. The results of this research will provide valuable insights which may influence future treatment approaches and is the basis for some very informative further GIST research. Thank you to all of our supporters for helping to raise the funds that have made this work possible!
IMPORTANT: Please can you help Professor Eamonn Maher with his Research Study?

Professor Eamonn Maher
We have received a request from Professor Eamonn Maher at the University of Cambridge asking if we can help him make contact with anyone who has had:
- two or more primary GISTs or a GIST and another tumour, for inclusion in the multiple primary tumour study he is working on.
Though this combination of tumours is an uncommon event it can have several causes. Professor Maher and colleagues at the University of Cambridge are investigating how often this can be caused by inherited genetic changes.
They have requested that any GIST patients who fit the above criteria contact them directly for further information at: eamonn.maher@nhs.net
or write to: Prof. Eamonn Maher, Box 238, Addenbrooke’s Hospital, Cambridge Biomedical Campus, Cambridge CB2 0QQ. Participants will need to provide a blood sample and clinical information but the study does not require a visit to Cambridge.
Many thanks for your help, we hope that we will be able to help Professor Maher to help us!
Have your say in the next phase of the NCRI "Future of surgery" research project...
We have received a request from the NIHR Bristol Biomedical Research Centre, via the NCRI, asking if we can help with their COHESIVE research study aiming to improve the regulation of new surgical techniques.
The letter of invitation and survey links follow below, thanks in advance for completing the survey!
"We are writing to invite you to take part in the next phase of the NCRI Future of Surgery project: the COHESIVE (Core Outcomes for early pHasE Surgical Innovation and deVicEs”) study.
Before new medicines can be introduced into clinical practice, they undergo rigorous testing and this process is highly regulated. New medical devices are also regulated before they can be widely used, though ways of assessing their safety and performance vary, and standardisation of what is reported is also lacking. New surgical procedures are, however, even less regulated. There is uncertainty and inconsistency around what outcomes should be monitored and reported to evaluate them, which can compromise patient safety.
The aim of COHESIVE is to develop reporting guidelines and a core outcome set (COS) for new surgical procedures and devices. A COS is an agreed minimum set of outcomes that are measured and reported in all new surgeries. This study is being conducted by the NIHR Bristol Biomedical Research Centre, in collaboration with NCRI, and is part of a research agenda which aims to develop better methods for selecting, measuring and reporting outcomes of surgical innovation.
It is essential that the views of consumers are at the heart of this process. We would like to record your opinions across three online consensus surveys sent out over a few months. A link to the website to access the survey can be found below and each survey *should take approximately 20 minutes to complete.*
Anyone who has had surgery, whether for cancer or another reason, can take part in this study. *If you have family, friends or colleagues that would like to take part then please forward this link.*
*COHESIVE Study: Delphi Survey Round 1
Detailed information can be found in the Patient Leaflet on the COHESIVE study website
If you have any queries, please get in touch with us using the contact
information below.
Kind regards,
Dr. Kerry Avery, Ms. Shelley Potter & Prof. Jane Blazeby
NIHR Bristol Biomedical Research Centre, Bristol Medical School, University of Bristol, 39 Whatley Road, Bristol, BS8 2PS