Professor Martyn Caplin heads the Academic Neuroendocrine Tumour Unit research programme, which spans world-class expertise across the Royal Free London and University College London (UCL).

The programme includes genomic studies assessing genes that cause and control NET growth, as well as other basic molecular science programmes looking at targeting specific aspects of tumour cell biology, which can be used for earlier diagnosis and therapy. Research programmes include:

  • Professor Chrissie Thirlwell, formerly of UCL and the Royal Free London and now in Bristol, is collaborating on a research programme on epigenomics assessing the impact of changes that affect gene function. 
  • A research programme with Professor Krista Rombouts and Professor Caplin is investigating the cause and potential treatment of desmoplasia (fibrosis) associated with NETs derived from the intestine. 
  • Professor Christos Toumpanakis and Dr Conrad von Stempel are working on an artificial intelligence programme utilising radiomics to see if those NETs with fibrosis that are going to cause problems such as blockage and pain can be predicted. 
  • Dr Dalvinder Mandair is involved in the investigation of biomarkers for intestinal NETs.
  • Professor Andrew Smith is collaborating to assess the role of the gut microbiome on the growth of NETs, its association with desmoplasia and assessing the microbiome in response to therapy. 
  • Dr Dan Krell is leading a team with Professor Rombouts and Professor Caplin to further understand the biology of high-grade NETs with the aim of seeing how new treatments can be developed. 
  • There are programmes addressing new nuclear medicine advances with Dr Shaunak Navalkissoor, Dr Gopi Gnanasekaran and Dr Aimee Hayes
  • There is a specialist clinic and research into carcinoid heart disease led by Dr Joseph Davar. 
  • There is further specialist endocrine hormonal research in NETs with Professor Ashley Grossman, Dr Bernard Khoo, Dr Effi Khara and Dr Eleni Armeni.

In the future, the focus of research is likely to be on genomic profiling, where the genetic sequence can be determined from a biopsy. Each patient may have different types of mutation (abnormal genetic changes), which may make their tumours susceptible to different therapies.

There are many other exciting areas the group is researching, including earlier diagnosis, better understanding of NET biology and the development of new treatments.

Professor Caplin believes this research will continue to progress the care of NET patients and that tangible results are not far away.

The research programme involves collecting samples of blood and tissue from patients with NETs and analysing the (epi)genetic changes that cause these tumours to develop. 

Samples are stored safely in the dedicated NET biobank. 

It is not fully understood why NETs develop. These tumours are rare, and there are many different subtypes, meaning that collecting enough samples to perform meaningful research can be challenging.

It is hoped the information gained from analysis of the samples in the biobank will help identify why these tumours develop, and suggest potential targets for new, more effective treatments.

As well as developing new treatments, it is important to identify which patients are most appropriate for a particular treatment.

By identifying biomarkers, both from tumour samples and blood tests, this helps doctors to decide not only which treatment to give a patient, but also when the most appropriate time to start treatment is.

When you attend the NET clinic at the Royal Free Hospital, one of the doctors or a member of the research team may ask you to consent to take part in this research.

Alternatively, if you would like to help and have not got a clinic appointment coming up, you can email the unit (rf.netadmin@nhs.net) and the appropriate forms will be sent out to you.

Most tissue specimens are held for at least 10 years. Once you have consented to take part, the research team will contact the hospital where you had your surgery and request that a small piece of the sample is sent for analysis.

If your tumour has spread or returned after surgery, a small blood sample may also be requested. However, this is optional and blood is not needed from all patients.

If you are due to have surgery at the Royal Free Hospital to remove a NET, the sample that can be taken provides very good quality DNA for analysis. 

If you are starting a new treatment, such as chemotherapy, you may be asked to give a regular blood sample before, during and after your treatment. This is to help identify biomarkers in the blood which can predict how a patient will respond to a particular treatment.

The NET research programme is supported by:

  • Antonia and Charles Filmer, and all those who have generously contributed to their fundraising campaign
  • Cancer Research UK 
  • NET Research Foundation USA grant.

If you would like more information about the NET research programme, please email rf.netadmin@nhs.net.

The NET unit runs a number of different trials in order to find new applications of existing drugs and to evaluate new agents in order to control tumour growth and symptoms related to NETs.

There is also research on how the condition influences quality of life and the psychological impact of this relatively rare condition.

If you are interested in taking part in a clinical trial or would like further information, please contact our senior research nurse on melissa.back@nhs.net or call 020 7830 2458.

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