- Financial Outcomes in People with NETs (Australia)
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, 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
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.
- CommNETs/NANETS Endorsement and Update of ENETS Pulmonary NET Guidelines
Publication pending. 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.
- 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.
- Rates of Hypopituitarism Following PRRT for NETs
Basal pituitary profile will be measured for patients with unresectable NETs three years after their first course of peptide receptor radionuclide therapy to determine the prevalence of hypopituitarism. Investigators: Marianne Elston, Richard Carroll, Amanda Love, David Ransom. Members: David Wyld, David Pattison, Dale Bailey, Sharon Pattison, Dev Kevat, Zhen Rong Siow, Eva Segelov.
- 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.
- Paediatric, Adolescent and Young Adult (PAYA) NETs
The NETwork! Registry will be used to describe the incidence and characteristics of NETs in the PAYA population in New Zealand and explore the patterns of care compared to current adult guidelines. A comparison will also be made with the Queensland NET registry to compare incidence, anatomical site of origin and outcome across countries. Investigators: Sharon Pattison, Kate Parker, David Wyld. Members: Ruellyn Cockroft.
- 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.
- Surgical Controversies in NETs: Determinants of Surgical Decision Making
1000 Minds software will be used to review reasoning and modifiers behind surgical decision making in three key areas of NET surgical treatment where there is lack of trial evidence available to inform clinicians. Investigators: Jonathan Koea, Sharon Pattison.
- Familial NET Registry
The goal of this project is to create a national registry of patients and their families in New Zealand with germline mutations resulting in familial NET syndromes, including MEN1 and phaeochromocytoma/paraganglioma syndromes, to facilitate investigator led clinical research, guidance on the appropriate use of genetic testing, inform biochemical and radiological surveillance programs, and standardize clinical practice. Investigator: Richard Carroll. Members: Marianne Elston, Amanda Love.
- Financial Outcomes in People with NETs (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.
There are a number of projects currently in development within CommNETs including four clinical trials.