Supporting Research

Our research fund supports UK Neuroendocrine Cancer research

We want and need more research for Neuroendocrine Cancer. No major research organisation has a dedicated research programme for this cancer type, therefore a vital part of our work is supporting researchers and specialist centres undertaking neuroendocrine research and encouraging more research to be carried out in the future.

We have a vision of a world in which people know how to recognise, diagnose, treat, care for, and ultimately, cure patients with Neuroendocrine Cancer. If you would like to help then please click on the button below to make a donation. **Please ensure that you let us know when donating, that your donation is to go towards research**

Thank you. 

Neuroendocrine Cancer UK (formerly NET Patient Foundation) clinical fund supports:

  • Research into patient focused issues related to patient experience and equality of care
  • Vital basic clinical research in the UK with our partners at UKINETs
  • Nurse and dietetic research 
  • Quality of Life research 
  • Psychosocial research
  • Epidemiology research. 


Our clinical fund supports pilot research projects in the UK. We run part of our research programme in collaboration with our friends at UKINETS. 2018 marked the beginning of our research road trip to identify outstanding research needs for the benefit of patients with Neuroendocrine Cancer and Neuroendocrine Cancer syndromes and to devise a research strategy for the same, ensuring that current research is in line with patient expectation. This road trip is a collaborative initiative with AMEND. 

Neuroendocrine Cancer UK Foundation Research Grants

Complex and groundbreaking pilot research projects made possible through your support. Getting research into Neuroendocrine Cancer off the ground can be challenging, and our ‘prime pumping’ grants can lead to much larger international grants. Three of our research grants so far have done just this.

This year we have teamed up with UKINETs and are pleased to announce the 2019 UKINETS and Neuroendocrine Cancer UK research grant in support of Neuroendocrine Cancer research. 

Since 2013 there have been 5 research grants awarded through funds raised by the Neuroendocrine Cancer UK and UKINETs. The objective of these grants is to offer support for Neuroendocrine Cancer research groups to obtain pilot data leading to larger comprehensive studies. To date, all recipients have achieved this objective.

For each grant call there has been an enthusiastic response from Neuroendocrine Cancer research groups throughout the UK. The quality of the applications to date has been extremely high, and following external peer review, six applications have been funded. The projects funded to date are summarized below and have furthered our knowledge of NET epidemiology, early diagnosis and biology.

Dr Chrissie Thirlwell, Chair, UKINETS Research Committee

2013 recipient

Professor Mark Prichard led a team aiming to understand the cause of genetic changes that result in neuroendocrine tumours of the stomach. Prof Prichard is Professor of Gastroenterology at the Institute of Translational Medicine, University of Liverpool.

Neuroendocrine tumours (NETs) of the stomach occur most commonly in patients who have pernicious anaemia. In this condition, patients can no longer produce stomach acid. This means that they cannot absorb vitamin B12 from their food and this leads to the development of anaemia.

Patients with pernicious anaemia also produce too much of a hormone called gastrin and in these individuals high levels of gastrin can usually be detected in a fasting blood sample. In people without pernicious anaemia, gastrin stimulates the stomach to produce acid. However, patients with pernicious anaemia cannot produce stomach acid, and therefore, gastrin stimulates another cell type in the stomach (called the ECL cell) instead. Gastrin makes these ECL cells divide and grow more quickly than normal and in some cases this can lead to the development of NETs.

If these so called ‘type I gastric NETs’ are small (less than 1cm in diameter), patients usually require no treatment. Doctors normally recommend that such tumours are regularly monitored by 1-2 yearly camera tests (endoscopies). However type I gastric NETs that measure more than 1-2cm in size may cause problems and they are therefore usually removed (by endoscopy or surgery).

We have recently conducted a clinical trial in eight patients with type I gastric NETs to see whether a new tablet called Netazepide can be used instead of surgery to make these tumours shrink. Netazepide is a gastrin receptor antagonist, meaning that it is a drug that blocks the effects of gastrin. We showed that netazepide caused some type I gastric NETS to shrink in size and importantly this medication caused no significant side effects. Further longer trials involving larger numbers of patients are needed to assess how effective this new treatment really is, but netazepide may turn out to be an effective alternative to the more invasive surgical treatment options for this type of tumour.

We plan to use the current grant funding from the NET patient foundation and TransNETS to analyse how the expression of several thousand genes changed in the stomachs of our eight trial patients during and after netazepide treatment. Biopsy samples are already available for these studies. The results of this research may eventually enable us to develop tests to monitor whether netazepide treatment is effective in an individual patient and may also help us to decide whether we should add in treatment with an additional second drug to make netazepide therapy more effective.

2014 recipients

Dr Davlinder Mandair is a trainee gastroenterologist who is currently undertaking a PhD under the supervision of Prof Tim Meyer, Prof Martin Caplin and Dr Chrissie Thirlwell at the UCL Cancer Institute in London.

The project builds on previous work conducted in Prof Meyer’s Lab which demonstrated, for the first time, that circulating tumour cells (CTCs) were detectable in the blood of patients with a range of NETs, and that their presence indicated an adverse prognosis. Technology has now advanced to the extent that detailed molecular characterisation can be conducted on single cells and this project will compare the genetic changes seen in primary tumour tissue with that of CTCs and also with cfDNA (pieces of DNA that arise from the tumour and can be found circulating in the blood stream).

If we can show that CTCs and cfDNA does indeed accurately represent the tumour, then we will be able to track how the tumour evolves over time and during treatment. This may allow clinicians treating patients with NETs to select the appropriate therapy and to anticipate the emergence of resistance. As cancer therapy becomes increasingly personalised, it is important that we can undertake this type of analysis so that patients can benefit fully from the new drugs that target specific cancer pathways.

Prof Ramage is a Consultant Physician in Gastroenterology and Hepatology, and lead clinician for the Neuroendocrine Tumour Service at King’s College Hospital NHS Foundation Trust.

The project will study the NETs that were identified in the Colorectal NET and the Bowel Cancer Screening Programme (BCSP). The aim is to understand how these were identified, how they were investigated and how they were treated.

The Bowel Cancer screening programme has screened 1 million people using faecal occult blood (FOB -blood in the stool) testing and 17,500 colonoscopies have been performed. Overall, 7.8%  ( women) and 11.6%  (men) of the colonoscopies detected a colorectal (CR) cancer. However the data regarding the NET tumours that were identified has not been analysed.

The incidence of CR NET in the general population is thought to be 1.3 per 100,000. The incidence in patients with positive FOB is unknown but CR cancer incidence is 46 per 100,000 in England and thus NET incidence might be 46/1.3 times less likely to be found than CR cancer. This would be 35.4 times less likely which would equate to 1772/ 35.4=  50 cases. It is also possible that some ileal carcinoids will have been found during colonoscopy, and these are twice as common as CR NET.

This study will identify how many CR and ileal NET were found by screening if screening has any value for earlier diagnosis. It will also establish how many of these were seen by NET specialists.

2015 recipient

Jorge Barriuso who works with Prof. Juan Valle at the Christie Hospital was awarded £30,000. The aim of the project is to identify predictive genetic markers of exceptional response to targeted therapies, therefore allowing treatment stratification. Samples from the Christie NET biobank would be used for this pilot study.

This year the £30,000 grant will be funded solely by the NET Patient foundation, the details and timeline for applying will be posted on the UKINETs and NET Patient Foundation websites in July 2016. The successful application will be invited to present their project and results at the UKINETs annual meeting.

2016 recipient

Congratulations to Christodoulos Pipinikas, the recipient of our 2016 award, which will be funding this exciting project:

Using an integrated approach combining data generated through the use of different, advanced molecular tools, we have previously demonstrated that neuroendocrine tumours of the pancreas and gastrointestinal tract are highly epigenetically dysregulated and have identified several altered biological pathways and genes that may form the basis for the development of novel therapeutic targets. In addition, our group has identified specific molecular disease subtypes associated with a significant impact on patients’ survival, indicating that these may benefit from different treatments. Using a similar approach, we would like to extend our understanding of the key molecular events involved in the development and progression of bronchopulmonary neuroendocrine tumours (BP-NETs). BP-NETs represent a significant disease burden with socioeconomic extensions due to their increased incidence and decreased 5-year survival rates. BP-NETs comprise approximately 20-25% of all lung cancers and represent a spectrum of tumours arising from neuroendocrine cells of the bronchopulmonary epithelium. Tumour classification into the correct histological sub-group is strongly predictive of patients’ prognosis but relies on few, difficult to reproduce pathological parameters which are often affected by a high inter-observer variability. Therefore, the aim of this project is to identify novel and accurate molecular tools in order to improve the classification of these tumours. This in turn will provide better prognostic information and help with choosing more appropriate treatments. In addition, we aim to study the underlying pathogenic mechanisms involved in disease development and progression through the use of large-scale integrated omics analyses.

2018 recipients

The TRACERx – (TRAcking Cancer Evolution through therapy (Rx))

One of the winners of the UKINETs/NPF grants was one of the TRACERx team. We are delighted that Lung NETs will  now be included in this research project. Want to know more about TRACERx? read below….

The TRACERx (TRAcking Cancer Evolution through therapy (Rx)) lung study is a multi-million pound research project taking place over nine years, which will transform our understanding of non-small cell lung cancer (NSCLC) and take a practical step towards an era of precision medicine. The study will uncover mechanisms of cancer evolution by analysing the intratumour heterogeneity in lung tumours from approximately 850 patients and tracking its evolutionary trajectory from diagnosis through to relapse. At £14 million, it’s the biggest single investment in lung cancer research by Cancer Research UK, and the start of a strategic UK-wide focus on the disease, aimed at making real progress for patients.

Led by Professor Charles Swanton at UCL, the study will bring together a network of experts from different disciplines to help integrate clinical and genomic data and identify patients who could benefit from trials of new, targeted treatments. In addition, it will use a whole suite of cutting edge analytical techniques on these patients’ tumour samples, giving unprecedented insight into the genomic landscape of primary and metastatic tumours and the impact of treatment upon this landscape. 

In future, TRACERx will enable us to define how intratumour heterogeneity impacts upon cancer immunity throughout tumour evolution and therapy. Such studies will help define how the clinical evaluation of intratumour heterogeneity can inform patient stratification and the development of combinatorial therapies incorporating conventional, targeted and immune based therapeutics.

Intratumour heterogeneity is increasingly recognised as a major hurdle to achieve improvements in therapeutic outcome and biomarker validation. Intratumour genetic diversity provides a substrate for tumour adaptation and evolution. However, the evolutionary genomic landscape  of non-small cell lung cancer (NSCLC) and how it changes through the disease course has not been studied in detail. 

The other worthy winner was Kate Lines, a PostDoctoral researcher, who works at the Radcliffe Department of Medicine in Oxford, alongside Professor Raj Thakker. She is continuing here work on molecular genetics in pancreatic neuroendocrine tumours.

“I am delighted and very grateful to have been awarded NET patient foundation award at this years UKINETs meeting. I am very much looking forward to beginning the study. As an early career scientist this grant is especially important as the data generated from the project will help form the basis of my future NET research career”.

“The aim of the project is to develop a new drug for the treatment of pancreatic neuroendocrine tumours (PNETs). We have previously shown that a drug called JQ1, which inhibits the function of a family of proteins called the BET family, could reduce the number of PNET cells in the laboratory. This family of proteins help to control the expression of genes that promote tumour cell growth and prevent tumour cell death, by binding to chemical marks in specific DNA regions, also known as epigenetic regulation. Therefore, by inhibiting the activity of the BET proteins we were able to prevent the cell growth and increase cell death. 

Although JQ1 has shown promising results in PNETs, similar to a chemotherapy, it can act on any cell that expresses the BET proteins, and therefore may have side effects. The focus of this study is therefore to generate a new drug that specifically targets JQ1 only to NET cells or tissues. To do this we are using a man made version of the hormone somatostatin, called a somatostatin analogue. Receptors that somatostatin binds to are only expressed in certain endocrine tissues, and are seen in high levels in PNETs. Therefore by making a drug with a somatostatin analogue joined to JQ1, we plan to target JQ1 only to the PNET cells. We will test the ability of this new somatostatin-JQ1 drug to reduce the number of PNET cells. If successful, the ultimate aim is to use this data to plan a clinical trial of the somatostatin-JQ1 drug in PNET patients.”

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