None listed
Conditions
Brief summary
PRRT is a highly targeted therapy for NET patients and was first available in NZ (as a national service) in July 2021. At this stage, all PRRT for people with NETs is provided in Auckland. This study employs quality clinical data at the interface between quality patient care and service improvement and research. A high quality service needs to collect high quality data in order to learn and improve. Previous relevant work includes development of the retrospective New Zealand NETwork! Registry (NETR). This demonstrated firstly the extensive work to create and maintain a registry, and secondly, the complexities involved with NETs. These complexities included the changing diagnostic criteria and reporting guidelines, clinical community awareness, vast primary sites and histological types. The lessons from NETR confirmed the need for an accurate and available data source to inform clinicians who are treating these patients. This study aims to establish Aotearoa’s first prospective database of NET patients recommended for PRRT, with a focus on treatment and clinical outcomes. The key objectives are focussed on: how data is brought into the database (piloting automated drawing of data fields from hospital systems); the database itself (governance and robust data field development); and how data and insights are extracted from the database (reporting PRRT outcomes from NZ patients, and development of an interactive data tool).
Interventions
Peptide Receptor Radionuclide Therapy (PRRT) is a highly targeted therapy for neuroendocrine tumour (NET) patients and was first available in NZ (as a national service) in July 2021. PRRT works by administering a radioactive isotope tagged onto a somatostatin analogue (e.g. octreotate), which binds to somatostatin receptors on the tumour cells. These tumour cells then absorb the radiation and are killed. This prospective database is focused on PRRT treatment and outcomes, and is anticipated to have ongoing follow-up. This study will involve the collection of patient medical records that already exist as part of standard clinical care. This includes data points at multidisciplinary meeting (MDM), referral, first specialist appointment (FSA), each cycle, 3 months after course has ended, and regular future follow-up which is anticipated to be approximately biannually for 5-years (funding-dependent).
Sponsors
Eligibility
Inclusion criteria
Diagnosis of neuroendocrine neoplasm and recommended for PRRT treatment by the national NET MDM.
Exclusion criteria
Diagnosis of neuroendocrine neoplasm but deemed unsuitable for PRRT treatment as determined by NET MDM.