We are thrilled to share news our community has been waiting for: a new $3 million national research initiative called PLANETARI has been funded through the Australian Government’s Medical Research Future Fund (MRFF), and it has been built with patients at the centre from day one.
For too long, neuroendocrine cancer has been under-recognised and underfunded. Patients wait a median of more than nine years from first symptoms to diagnosis, and more than 60 per cent are only diagnosed after the cancer has already spread. PLANETARI is a direct response to that reality, and NECA is proud to have helped shape it.
Built on the foundation NECA laid
PLANETARI expands on the patient registry NECA originally established across five hospitals, adding national tissue collection and genetic testing so the data can finally be used for research at scale. The initiative was co-designed with NECA from the outset. NECA and consumer representative, Michael Perrone, will sit on the PLANETARI steering committee and working groups to make sure patient priorities stay front and centre throughout the five-year project.
“For so long, neuroendocrine cancer research has been poorly funded and outcomes have suffered,” said NECA CEO Meredith Cummins. “PLANETARI will change that: for our patients in Australia and ultimately internationally.”
Led by Associate Professor Richard Tothill from the Collaborative Centre for Genomic Cancer Medicine, PLANETARI brings together researchers and clinicians across six states, including Peter MacCallum Cancer Centre, Royal North Shore Hospital, Queen Elizabeth Hospital, Fiona Stanley Hospital, and Royal Brisbane and Women’s Hospital.
What PLANETARI will do
The initiative combines three things our community has long asked for:
- A national data platform: an existing registry of 1,646 patients will become a secure, connected research database linking clinical records, pathology, genomic data and patient-reported outcomes, so researchers can finally study patterns across hundreds of cases rather than working in isolation.
- A national tissue bank: blood and tumour samples from 500 more patients will be collected over four years, creating Australia’s first national biospecimen collection for neuroendocrine cancer.
- A genetic testing pilot (PLANETARI PRIME): 50 patients will have both their tumour and their own DNA tested. An earlier pilot at Peter Mac found more than one in four patients carried an inherited genetic change linked to their cancer, most of whom would never have been offered testing under current guidelines and would never have known.
Why this matters to patients
NECA Consumer Advisory Group member and NET Patient Therese Townsend, has been part of the push for a coordinated national research effort for years.
“Those of us with rare cancers don’t hope for better treatments from large, traditional clinical trials, these need many patients,” Therese said. “What we need are clever and innovative ways of gathering and interpreting the data from our many appointments, tests, scans and treatments. PLANETARI will ultimately give us access to new, innovative treatments. The team is working so hard to make our lives fairer and better.”
Dr Emma Boehm, a NET clinician scientist at Peter Mac who is driving the clinical side of the project, put it simply: “NECA laid the groundwork. We’re following where the patient group has led.”
What happens next
PLANETARI will run over five years, with a total project value of more than $6 million once university, hospital and industry contributions are included. For the more than 31,000 Australians living with a neuroendocrine tumour, it represents something that hasn’t existed before: a genuinely national research effort, built with the patient community rather than just for them.
NECA will keep our community updated as PLANETARI progresses. In the meantime, we want to thank everyone who has shared their story, joined the registry, and pushed for this moment. This funding exists because of you.
PLANETARI is funded by the Australian Government’s Medical Research Future Fund and led by the Collaborative Centre for Genomic Cancer Medicine, a joint venture between the University of Melbourne and Peter MacCallum Cancer Centre, co-designed with NeuroEndocrine Cancer Australia.
