About

The NETwork! Project: a national study of neuroendocrine cancer

The NETwork! Project is a New Zealand wide alliance of cancer clinicians and scientists who are working together in a new national framework to manage and study neuroendocrine cancers. Neuroendocrine cancers (NETs) range from very slow to very fast-growing cancers that can occur in most areas of the body. The best treatment for each NET cancer is difficult to choose, because each NET can be so different from another.

NETwork! combines clinical practice and scientific expertise to improve outcomes for people with NET cancer. There are four main parts of the NETwork! Programme.

About

The NETwork! Project: a national study of neuroendocrine cancer

The NETwork! Project is a New Zealand wide alliance of cancer clinicians and scientists who are working together in a new national framework to manage and study neuroendocrine cancers. Neuroendocrine cancers (NETs) range from very slow to very fast-growing cancers that can occur in most areas of the body. The best treatment for each NET cancer is difficult to choose, because each NET can be so different from one another.

NETwork! combines clinical practice and scientific expertise to improve outcomes for patients with NET cancer. There are four main parts of the NETwork! Programme.

NET Registry

The first aim of the project is to record information on all patients diagnosed with NETs in New Zealand.

Genomic Analysis

Genomic analysis – looking back at previously diagnosed cancers

National MDM Framework

A nationwide program within which doctors can review NET cases at a regional level

NET Registry

The incidence, treatment and survival from NETs have never been examined in NZ.  The first aim of the project is to record information on all patients diagnosed with NETs in New Zealand.

We are doing this in two groups. First a shorter in-depth picture of all NETs in New Zealand during the 5 year period 2008 – 2012. Second is a longer term view of NETs in Auckland between 1995 and 2012. This will provide a description of NETs in NZ that has not been available until now.

This information will help us to plan better clinical care for patients with NETs. 

  • Reported epidemiology of Nets in NZ
  • National retrospective case review and data collection
  • 2000 cases identified to date
  • 1995-2012
  • Co-funded by Novartis
  • Current status
    • Ethics appoval Jan 2013
    • Database built and 1600 patients entered
    • Data collection ongoing across NZ.

Number of cases on Registry today

NET Registry

The incidence, treatment and survival from NETs have never been examined in NZ.  The first aim of the project is to record information on all patients diagnosed with NETs in New Zealand.

We are doing this in two groups. First a shorter in-depth picture of all NETs in New Zealand during the 5 year period 2008 – 2012. Second is a longer term view of NETs in Auckland between 1995 and 2012. This will provide a description of NETs in NZ that has not been available until now.

This information will help us to plan better clinical care for patients with NETs. 

  • Reported epidemiology of Nets in NZ
  • National retrospective case review and data collection
  • 2000 cases identified to date
  • 1995-2012
  • Co-funded by Novartis
  • Current status
    • Ethics appoval Jan 2013
    • Database built and 1600 patients entered
    • Data collection ongoing across NZ.

Number of cases on Registry today

Retrospective Genomic Analysis

Collection and analysis of tumours from patients who have previously had surgery or biopsies will help us to understand the biology of this type of cancer, and will also eventually provide information to guide patient care.

We will profile the genetic and molecular changes that occur in these tumours and compare these to clinical outcomes.

Prospective Genomic Analysis

Patients newly diagnosed with neuroendocrine cancer, who have a further surgery or biopsy planned,  will be asked whether the research team can use a part of their tumour for analysis, once it has been removed.

Analysis of these tumours will also allow us to identify genetic or molecular changes that cause these cancers, and to see how these relate to clinical outcomes as the treatment progresses. Ideally, this analysis will also find targets and weaknesses in each tumour that can be used to choose the best treatment options for patients in the future.

Z

*only additional tissue in excess of clinical requirements will be considered for procurement for this study to avoid compromising pathological standards of care.

Plasma Genomics

We are aiming to identify markers for the identification of and follow-up of NETs using non-invasive testing methods such as blood tests. By looking closely at the blood we hope to find specific molecules that can help diagnose NETs, monitor the development of the disease, or help us make decisions on the best treatments to give to individual NET patients. From our current research we have found specific molecules that are found in NETs and may be released into the body fluids in patients. The growth of a NET causes gene changes which can lead to changes in protein products, it is these changes that we are trying to characterise in the blood of NET patients. This project was initiated at the suggestion of patient groups during consultation with the research group; often NETs take a long time to diagnose, and it is hoped that the development of an accurate blood test may help to improve these diagnosis times.

Retrospective Genomic Analysis

Collection and analysis of tumours from patients who have previously had surgery or biopsies will help us to understand the biology of this type of cancer, and will also eventually provide information to guide patient care.

We will profile the genetic and molecular changes that occur in these tumours and compare these to clinical outcomes.

Prospective Genomic Analysis


Patients newly diagnosed with neuroendocrine cancer, who have a further surgery or biopsy planned,  will be asked whether the research team can use a part of their tumour for analysis, once it has been removed.

Analysis of these tumours will also allow us to identify genetic or molecular changes that cause these cancers, and to see how these relate to clinical outcomes as the treatment progresses. Ideally, this analysis will also find targets and weaknesses in each tumour that can be used to choose the best treatment options for patients in the future.

Z

*only additional tissue in excess of clinical requirements will be considered for procurement for this study to avoid compromising pathological standards of care.

Plasma Genomics

We are aiming to identify markers for the identification of and follow-up of NETs using non-invasive testing methods such as blood tests. By looking closely at the blood we hope to find specific molecules that can help diagnose NETs, monitor the development of the disease, or help us make decisions on the best treatments to give to individual NET patients. From our current research we have found specific molecules that are found in NETs and may be released into the body fluids in patients. The growth of a NET causes gene changes which can lead to changes in protein products, it is these changes that we are trying to characterise in the blood of NET patients. This project was initiated at the suggestion of patient groups during consultation with the research group; often NETs take a long time to diagnose, and it is hoped that the development of an accurate blood test may help to improve these diagnosis times.

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National MDM Framework

The final aim of this project is to aid the development of a nationwide program within which doctors can review NET cases at a regional level. This will allow for improved consistency of care for all NET patients across New Zealand.

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National MDM Framework

The final aim of this project is to aid the development of a nationwide program within which doctors can review NET cases at a regional level. This will allow for improved consistency of care for all NET patients across New Zealand.