Neuroendocrine research and the biobank

Professor Caplin heads the Academic Neuroendocrine Tumour Unit research programme which spans world-class expertise across the Royal Free Hospital and University College London. The programme includes genomic studies lead by Drs Tim Meyer, Chrissie Thirlwell and Professor Stephan Beck (outlined below) as well as other basic science programmes looking at targeting specific aspects of tumour cell biology which can be used for earlier diagnosis and therapy. We also have programmes specifically addressing new advances in molecular PET imaging, radionuclide targeted therapies as well as clinical trials for new therapies. The area of fibrosis related to intestinal carcinoid tumours is little understood and has very little therapy currently available and therefore we have developed a research programme specifically to address this. Associated with this is our specialist clinic and research into carcinoid heart disease led by Dr Joseph Davar. We have recently started a programme investigating depression in patients with neuroendocrine tumours and are looking to understand this further to enhance our patient support.

On the basis of our current work Professor Caplin feels the future is more likely to be going down the path of genomic profiling where we can determine the genetic sequence from a biopsy from individual cancer patients and then treat according to what the genomic profile is. Each individual patient may have different types of mutation (abnormal genetic changes) which may make their tumours susceptible to different therapies. We are moving to the age of personalised cancer care. Not only that but the genomic profile might change after a certain therapy and thus to optimise this in regards of changing therapy new samples for testing would be required from individual patients. Our own group at UCL/Royal Free Hospital have led in regards of demonstrating circulating tumour cells in the blood stream (Dr Tim Meyer) and can prognosticate on this but also we have just isolated DNA from such circulating tumour cells (Dr Tim Meyer & Dr Chrissie Thirlwell) which offers us the possibility to assess genomic changes repeatedly in patients. This obviously needs to be validated in many patients. The UCL/Royal Free group is combining with leading neuroendocrine tumour scientists in Manchester and Oxford and proposing a collaborative research programme in this area to the MRC. In addition there are many other exciting areas that our group are researching into both earlier diagnosis, better understanding of NET biology and development of new treatments. Professor Caplin is convinced that our endeavours will continue to progress the care of neuroendocrine patients and believes that tangible results are not that many years away.

What are we doing?

We are collecting samples of blood and tissue from patients with neuroendocrine tumours and analysing the (epi)genetic changes that cause these tumours to develop. Samples are stored safely in our dedicated NET Biobank.

Why is this important?

We don't yet fully understand why neuroendocrine tumours develop. These tumours are rare, and there are many different subtypes meaning that collecting enough samples to perform meaningful research can be challenging.

We hope that the information we gain from analysis of the samples in our 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 ('personalised medicine'). We hope to identify 'biomarkers' both from tumour samples, but also from simple blood tests, which will help doctors decide not only which treatment to give an individual patient, but also when the most appropriate time to start treatment is.

How do we do it?

When patients attend the neuroendocrine tumour clinic at the Royal Free one of the doctors or the research team may ask them to consent to participate in this research. Alternatively if you would like to help and don't have a clinic appointment coming up you can email us (address below) and we will send the appropriate forms out to you in the post and take it from there.

Have you had surgery to remove a neuroendocrine tumour in the past?

Most tissue specimens are held for at least ten years, once you've consented to participate the research team will contact the hospital where you had your surgery and request a small piece of the sample be sent to us for analysis. If your tumour has spread or returned after surgery we may ask for a small blood sample in addition to your permission to request the tumour sample, but this is optional and we do not need blood from everybody.

Are you due to have surgery to remove your tumour?

Any patients that are due to have surgery at the Royal Free Hospital to remove a neuroendocrine tumour are particularly valuable to our research as we can collect 'fresh' tissue which can be frozen and stored in our Biobank. This provides us with very good quality DNA for analysis. We aim to take an additional blood sample on all patients to give additional 'normal' DNA for analysis.

Are you starting a new treatment for your neuroendocrine tumour?

Some patients who are starting new treatments such as chemotherapy may be asked to give a regular research blood sample before, during and after their treatment. This is to help us identify 'biomarkers' in the blood which can predict how a patient will respond to a particular treatment.

Need more information?

See www.ucl.ac.uk/cancer/medical-genomics/clinepi 
Contact christina.thirlwell@ucl.ac.uk
Acknowledgement: Our research is funded by Cancer Research UK and The Raymond and Beverley Sackler Foundation

Clinical research trials

Do you want to participate in a clinical trial?

The neuroendocrine unit runs several different trials in order to find new applications of existing drugs, also, the evaluation of new agents in order to control tumour growth and symptoms related to NETs. Finally, we are also interested on how this condition influences your quality of life, in other words, the psychological impact of this relatively rare condition.

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