Data is Power - Registry Experience at an ENETS COE


Introduction: The collection of anonymised data for patients with neuroendocrine tumours is necessary for the ongoing improvement of patient care and research/clinical trials.

Aim(s): To develop a Registry from an in-house database.

Materials and methods: An in-house NET database (MS Access) containing clinical and quality of life data for NET patients treated with PRRT developed at the Peter MacCallum Cancer Centre in 2009 was expanded in 2016 to accommodate a broader patient cohort with the aim of becoming an ENETS Centre of Excellence. In parallel, PMCC collaborated in the development of a central, national data repository resulting in the implementation of the PLANET registry in 2019. Ethical considerations included the waiver of consent for retrospective patients and the proposal of an opt-out system of consent.

Conference: 17th Annual ENETSConcerence (2020)

Presenting Author: Hogg A

Authors: Hogg A, Stell A, Marusic P, Sinnott R, Cummins M,

Keywords: PROMS, mobile phone app, registry,

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