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PLANETS are excited to share the news that University Hospital Southampton have secured £200,000 funding from the Robert White Trust for a research project that aims to gain a better understanding of NET biology which may lead to a greater range of treatment options for patients with this rare disease.


Robert White was a former patient of Dr Mike Bayne’s at Poole Hospital who sadly died from pancreatic neuroendocrine cancer who left a large Legacy in recognition of the care he had received as an NHS patient to be used to improve the management of cancer for patients in Dorset. He was frustrated by the relative lack of research in the field of neuroendocrine tumours and this project is absolutely in keeping with his wishes to improve our understanding of this disease leading to improvements in treatment. His legacy amounts to at Trust of more than 9 million pounds which in addition to this project has so far funded a Neuroendocrine Specialist nurse for Dorset, enabled the development of the Radiotherapy satellite unit in West Dorset and the setting up of the PET scanner in Poole hospital in addition to numerous other projects.


The team at Southampton, led by Dr Judith Cave, are embarking on a project to improve understanding of the molecular, immunological and genetic features associated with NET dissemination, prognosis and response to treatment. There are 3 key reasons why they are doing this and felt that PLANETS supporters would be interested to read the details:


1. Because NETs are rare, there is a lack of large head-to-head clinical trials comparing treatment strategies, e.g. chemotherapy vs everolimus. The primary treatment for Grade 1 and Grade 2 NETs is surgery, and long-acting octreotide, radiolabelled octreotide (Peptide Receptor Radionucleotide Therapy or PRRT), chemotherapy and tyrosine kinase inhibitors or mTOR inhibitors can also be considered. Efforts have been made to identify which treatment out of the many options is most likely to benefit any particular patient. It seems likely that there will be a way to identify patients who will benefit from molecularly targeted agents such as everolimus, since the target (mTOR) is known, but as yet there are no evidence-based methods for selecting particular treatments. NETs with a higher proliferation rate are traditionally considered to be more likely to respond to chemotherapy, and proliferation rate can be conveniently estimated from a biopsy using an immunohistochemical stain called Ki-67. However it has been shown that while proliferation and response are correlated, there is wide variation in responses even for patients with similar Ki-67 or proliferation index. Ki-67 alone is not sufficient to select patients for chemotherapy. Evidence to guide treatment selection is urgently needed.


2. Despite sharing biological features, NETs are a very heterogeneous group of tumours and therefore require sub-classification. NETs most commonly arise in the bowel, pancreas or lung, but they can also be found in the skin, thymus and other sites. They can be broadly classified into foregut, midgut or hindgut NETs. NETs are further classified by tumour grade 1-3, and the grade is perhaps the most highly prognostically significant factor (see below). NETs are also sub-classified into functioning and non-functioning tumours. We need to improve our ability to prognosticate accurately for patients with NETs, i.e. to try to predict which patients will need treatment in the future, and when.


3. A better understanding of NET biology may lead to a greater range of treatment options for patients with this rare disease, for example immunotherapy. Immunotherapy has not been trialed in NETs at the current time, but is showing great promise in other tumour types. If through research we could identify a sub-group of NETs that were immunologically suitable for treatment then this would an important breakthrough.


There are two parts to the study:


Part A: To study archival tissue in consort with clinical data from our NET patients, to develop a molecular classification for NETs


Part B: To collect fresh tissue from tumour and healthy tissue, and blood samples, to perform testing including immune profiling and single cell sequencing to further explore specific hypotheses identified from Part A.


This is an observational study. Patients treated in the Wessex NET group, both now and in the past, will be considered for inclusion. Inclusion in this research will not have an impact on patients’ clinical treatment. The research will take place in the laboratory on tissue samples. We have been prospectively collecting consent on our hospital consent forms from NET patients over the last ten years to archive any remaining material from diagnostic or treatment procedures. Any tissue that has been previously stored or archived can be used for the study provided that the patient granted consent at the time the sample was taken. For new patients in the future, we will consent them in advance. We will be asking permission to used an un-needed tissues, and to take an extra blood sample. Before taking any fresh tissue, or any blood samples, suitable patients will be identified by the NET multidisciplinary team and will be approached by their treating clinician in advance of any biopsy or operative procedure. They will be given the invitation letter or consent form to read and consider.


We shall endeavour to update you on every stage of the research as we receive the information.


How the money raised is spent

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