The Patient-Oriented Neuroendocrine Tumor Registry for Australia

Neuroendocrine tumors (NETs) are rare forms of cancer. At present different clinical centers across Australia are responsible for the diagnosis, treatment and ongoing management of NET patients. Due to the lack of a cohesive, uniform health system, there is at present a fragmentation of data that negatively impacts insights that can be gleaned from population-wide data. This paper describes the Australia-wide NET registry (PLANET) and the way in which patients have been included as first-class citizens, i.e. they are not just a source of data captured in hospital settings, but active contributors of data themselves. We describe the registry realization and how the PLANET mobile applications have been adopted by patients.