NETs can contribute to the impaired digestion and absorption of nutrients, and cause symptoms making it difficult for people to follow their usual diet. The nutritional management of NETs is complex, and should be indidivualised, however, research has shown that the number of health professionals with adequate knowledge and confidence to identify and manage the nutritional complications of NETs and the nutrition information needs of patients, is limited. Prior research has also highlighted that health professionals caring for people with NETs report a lack of NET-specific nutrition guidelines as a barrier to provision of nutrition information to patients. Further to this the International Neuroendocrine Tumor Alliance (INCA) has identified diet and nutrition information as a key unmet need of people living with NETs. This collaborative project, involving health professionals and consumer organisations from Canada, Australia and New Zealand, aims to develop a NET-specific evidence-based consensus guidance document for the nutritional assessment and management of people living with NETs. This will be achieved in three phases: Phase 1 – a comprehensive literature review and publication to establish current nutrition evidence, Phase 2 – development of draft nutrition guidance statements using health professional expertise and consumer/patient feedback, Phase 3 – draft and publication of the guideline/consensus document so it can be accessed by health professionals in multiple countries.

Nutritional complications (malnutrition, weight loss, vitamin deficiency) in Neuroendocrine Tumors (NETs) are prevalent but poorly recognised by health professionals. Prior research as shown there are limited health professionals with the knowledge and confidence to identify and manage nutritional complications in people with NETs. Nutrition information and support also remains a key unmet need of people with NETs. Therefore, this research aims to develop a NET-nutrition online course which is an evidence-based and reputable source of training and education for health professionals managing NETs. This project is a collaboration between NET health professionals (medical, nursing and dietitians) and consumer organisations from multiple countries (Canada, Australia and New Zealand), with an overall goal of educating health professionals to better identify and support the nutrition needs of people living with NETs. The development of the NET-nutrition online course will occur over three phases: Phase 1 – a comprehensive literature review to extract evidence on the nutritional complications of NETs, Phase 2 – international focus groups with health professionals and consumers/patients to establish consensus on essential content for the course, Phase 3 – development of the online interactive course. Once developed the online course will be circulated through key NET organisations and endorsement will be sought from NET organisations and Dietitian/Nutrition Associations in key countries.

Treatment with peptide receptor radioligand therapy (PRRT) uses radioactive medications that are given through the blood and targeted to neuroendocrine tumors. While these treatments are very good at targeting the cancer and avoiding normal cells, a small number of patients will have their blood counts reduced during treatment as a result of the radiation effecting the bone marrow, and some may have long term damage to the bone marrow which may result in a blood cancer 5-15 years after receiving PRRT. This type of blood cancer usually results in patients dying from the second new blood cancer.

We now have the ability to identify when blood cells are starting to become abnormal but not yet a cancer by looking for certain mutations. This is called clonal hematopoiesis of indeterminate potential (CHIP). In this project we will use blood samples from patients who were treated with PRRT or PRRT plus a type of chemotherapy to see if identifying CHIP before PRRT may also predict which patients will have low blood counts during therapy or in the long term, develop a blood cancer. If this does predict those toxicities, we may be able to use this blood test to choose other therapies for those at high risk of toxicity.