NETs are uncommon (6–10:100,000) and complex neoplasms. The PLANET registry (www.planet.org.au) has been instigated to address the rise in incidence and the lack of a national NETs registry, that will allow patient data to be systematically collected and curated in order to better understand NETs.
The aim is to create an Australia-wide clinical registry for NETs, that will collate key data to evaluate patient outcomes leading to valuable improvements in clinical practice, health outcomes, and facilitate collaborative research. This Registry will also give patients a unique opportunity to directly contribute to specific data collection.
The PLANET registry has a unique multi-disciplinary approach with active participation of oncologists, endocrinologists, gastroenterologists, surgeons, nuclear medicine physicians, pathologists, radiologists, specialist nurses and consumers, that operates as a committee, supported by a targeted security-oriented web-platform developed by the Melbourne eResearch Group. PLANET has established a descriptive, multi-centre, observational, retrospective and prospective, non-interventional, open-ended surveillance registry. Patients are empowered to contribute to this registry through accompanying privacy-protecting mobile applications (apps). This enables patients to enter data on their quality of life (QoL), Bristol Stool Scale, Weekly Vitals (weight, height, BMI) and ECOG score, as well as receiving notifications from doctors via the registry.
PLANET is in the process of ingesting data from major cancer centres across Australia. The registry data model has been standardardised by the PLANET steering committee. Initial interrogation of the registry resulted in a number of summary data. Examples will be demonstrated at the meeting.
Uncommon tumours such as NETs are understudied, and not well understood in terms of their biologic and clinical characteristics. NETs have significant impact on patients due to their long disease course, with significant chronic morbidity and impaired QoL. PLANET has the potential to enhance our understanding of NETs, foster collaborations, clinical-trial participation, and make a mark internationally.