Completed Projects
- Using Discrete Choice Experiments to Understand the Treatment Preferences of Patients with NETs
Patients will be surveyed using three clinical scenarios for which there is often uncertainty in treatment decision-making to explore relative utility values for treatment attributes, ranking of patient preferences in treatment, and subgrouping based on patient demographics using 1000 Minds Software. Investigators: Matthew Anaka, Simron Singh. Members: David Chan, Lesley Moody, Eva Segelov, Nick Pavlakis, Chris Jackson.
- CommNETs Surgical Symposia
A six-part surgical management of small bowel NET series of publications. Members: Jonathan Koea, Janice Pasieka, Julie Hallet, Calvin Law, N.S. Rajaretnam, G.Y. Meyer-Rochow.
- Pituitary function following peptide receptor radionuclide therapy for NETs
Multi-centre cohort study of pituitary profile in patients with unresectable NETs who had received PRRT at least 2 years ago. Members: Marianne Elston, Amanda Love, Dev Kevat, Richard Carroll, Zhen Rong Siow, Sharon Pattison, Veronica Boyle, Eva Segelov, Andrew Strickland, David Wyld, Richard Gauci, Kim Kennedy, David Random.
- CommNETs/NANETS Endorsement and Update of ENETS Pulmonary NET Guidelines
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CommNETs collaborated with the North American Neuroendocrine Tumour Society (NANETS) to review the methodology and content of the existing European Neuroendocrine Tumour Society (ENETS) guidelines on lung NET diagnosis and management. A consensus update was produced to guide clinical management and direct research efforts within the increasing lung neuroendocrine tumour population. Members: Simron Singh, K. Bergsland, Cynthia M. Card, Thomas A. Hope, Pamela L. Kunz, David T. Laidley, Ben Lawrence, Simone Leyden, Michael Michael, Lucy E. Modahl, Sten Myrehaug, Sukhmani K. Padda, Rodney F. Pommier, Robert A. Ramirez, Michael Soulen, Jonathan Strosberg, Alia Thawer, Benjamin Wei, Bin Xu, Eva Segelov.
- Financial Outcomes in People with NETs (Australia)
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A cross-sectional study using an online survey and exploratory analysis of Ministry of Health data to assess financial burden experienced by neuroendocrine patients. Investigators: David Wyld, John Leyden. Members: Kate Wakelin, Simone Leyden, Louisa Gordon, Jan Mumford, Nick Pavlakis, Michael Michael, David Chan.
- NET Indicators
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A dual round Delphi consensus mechanism, first round online and second round face to face expert focus group, were conducted to develop a small set of NET indicators that can be used to measure quality of care of people with NETs in Australia, Aotearoa New Zealand, and Canada.
- A Modified Delphi Process to Identify and Prioritize Gaps in NET Research
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A three-round modified Delphi process was undertaken to identify gaps in NET research and develop a well-founded set of research priorities to influence the CommNETs research agenda and action plan.
- Availability and Utility of Functional Imaging and PRRT in the CommNETs Collaboration.
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CommNETs centres were surveyed to compare the availability and accessibility of functional imaging and peptide receptor radionuclide therapy along with current practices and preferences, identifying a need for improved access and best practice guidelines.
- Follow-Up Recommendations for Completely Resected Gastroenteropancreatic NETs
Resulting publications:
https://jamanetwork.com/journals/jamaoncology/fullarticle/2688522
https://www.karger.com/Article/Abstract/488394
https://jamanetwork.com/journals/jamaoncology/fullarticle/2675009
CommNETs and the North American Neuroendocrine Tumour Society (NANETS) collaborated to generate patient-centered follow-up recommendations for completely resected gastroenteropancreatic NETs. The recommendations stratify follow-up strategies based on evidence-based prognostic factors that allow for an individualized approach to this complex and heterogeneous malignant neoplasm.
- Why are there so few Surgical Trials in NETs?
Editorial publication pending. Surgical perspective summarizing the barriers to conduct surgical trials in neuroendocrine tumours, particularly gastrointestinal and pancreatic NETs. Investigators: Jonathan Koea, Jenny Choi.
- Barriers to Indigenous Peoples Participation in Biobanking Genomic Research
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A literature review was conducted to define the barriers to indigenous peoples participating in biobanking, tissue banking, and genomic research. Four recommendations were identified for the consideration of researchers working with this patient population.
Current Projects
- Investigation into the relationship between tumour aneuploidy and prognosis for patient with pancreatic neuroendocrine tumour
In this project we will evaluate the prognostic value of LoH/MEN1 mutation analysis on an expanded
set of tumours through international collaboration with the aim of deriving a biomarker to guide clinical decision making. Deborah Wright, Julie Hallet, Benjamin Lawrence, Cristin Print, Jonathan Koea, Paula Shields, Peter Tsai.
- A CommNETs multi-country, cross-sectional survey of cognitive functions reported by neuroendocrine patients compared to their caregivers
Describe cognitive functions of people with metastatic stage IV NETs at first presentation to an oncology medical practitioner, assess correlation between Frontal Systems Behaviour (FrSBE) and FACT Cog score, and investigate correlation between patient and caregiver FrSBE scores. Janice Pasieka, Rachel Goodwin.
- Design and Creation of an Optimal Shared Care Model for NET Patients in the Community
Publication pending. A literature search, surveys, and advisory board meetings with NET oncologists and surgeons were conducted to develop a shared care model to streamline the transition of care between NET specialty centres and care providers outside of these centres. Investigators: Radhika Yelamanchili, Dorothy Lo, Alia Thawer, David Wyld, Warren Fingrut, David Chan, Simron Singh. Members: Harsh Naik.
- Quality of Life with PRRT
A retrospective audit of patients with unresectable metastatic neuroendocrine neoplasms treated with peptide receptor radionuclide therapy (PRRT) to assess if PRRT improves or maintains global health status. Investigator: Gabrielle Cehic. Members: Nadia Corsini, Grace Kong, Annette Hogg, Petra Marusic, Dale Bailey, Bryan Chan, Aimee Hayes, Dainik Patel.
- Financial Outcomes in People with NETs (Aotearoa New Zealand)
A cross-sectional online survey and Ministry of Health data will be used to assess financial burden experienced by neuroendocrine patients. Investigators: Sharon Pattison, Trudy Sullivan. Members: Gwen Pinches, Chris Jackson, William Leung, David Wyld, Louisa Gordon.
- GINET and PNET Database Study
Develop a process to aggregate data from CommNETs member databases in GINETs and PNETs and use this data to undertake a series of observational investigations reporting and comparing NET patient demographics and treatment trends.
- CommNETs/NANETS Prognostic and Predictive Biomarkers Guidelines
A series of consensus statements to personalize medicine, advocate for biomarker testing and set future research priorities in NETs.
- Establishing international neuroendocrine nutrition guidelines to optimise the nutrition-related screening and management for people with neuroendocrine cancers
Evidence based guidelines for the nutritional assessment and management of people living with NETs.
- Development of a NET-nutrition course: improving the nutrition knowledge of health professionals caring for people with neuroendocrine tumors
Creation of an online module to improve nutrition-related knowledge and routine practices of health professionals caring for patients with NETs, and reduce the severity of nutritional complications.
- NET Nutrition Screening Tool
Validation of a nutrition screening tool to identify NET patients that could benefit from dietitian consultation.
- Translational Medicine Working Group SOPs
Develop a set of CommNETs policies and procedures to harmonize sample processing.
Developing Projects
There are a number of projects currently in development within CommNETs.