National brain tumour register could offer patients hope

A national brain tumour register could offer a sliver of hope to about 2400 people diagnosed with brain tumours in Aotearoa each year, says Dr Thomas Park, a senior research fellow at the Centre for Brain Research at Waiapapa Taumatu Rau, University of Auckland.

International clinical trials testing treatments for brain tumours typically seek patients whose tumours fit a particular profile, but Dr Park says New Zealand lacks a register to find and contact those patients.

Park and his nationwide team of co-investigators have just received $29,907 from the Health Research Council to carry out groundwork to establish a national register of brain tumours.

This will fund a part-time national co-ordinator to work on the project.

However, millions will be needed to gather patient information and create detailed records about tumour types, treatments, and outcomes, says Dr Park. 

Currently, there is no national database that records information for all brain tumour patients in New Zealand.

A national register is needed to advance research on brain tumours within Aotearoa and could also attract international drug trials to New Zealand shores, he says.

“If we can get this register going, pharmaceutical companies will have the information they require, so they might invest in New Zealand, providing infrastructure and doctors for clinical trials.

“Brain cancer is a terminal illness, so most people want to take part in a trial, even if it has risks.

“Having that option is important, because having hope is a big thing, even if you know it’s a slim chance,” Park says.

At present, some patients with glioblastoma are travelling overseas to take part in trials offering immunotherapy, which uses the patient’s immune system to identify and kill cancer cells.

“Immunotherapy may not be a cure, but it could buy more time. For a patient with glioblastoma, with a dismal life expectancy of only one year from diagnosis, this would be beyond life changing.”

About 50 percent of all brain tumours are non-cancerous, though these can still be debilitating and fatal. The other half are cancers, which can originate in the brain or start in other parts of the body and migrate to the brain – most commonly from lung and breast cancers.

Only about five percent of people survive for five years after being diagnosed with malignant brain cancers in Aotearoa. It is also the deadliest cancer for children aged under 14.

“That survival rate is comparable to other nations, but we’re by no means the best,” Park says.

While non-cancerous tumours can be surgically removed, people can be left with long-term impairments, such as having difficulty walking, talking or reading, due to damage to the brain.

Certain brain tumours disproportionately affect Māori and Pacific people, so Park has consulted with Māori communities and is seeking input from Pacific communities on the project.

After receiving repeated requests from patients for help advocating for access to new brain cancer treatments, Park started working towards setting up a national register two years ago.

In 2023, he helped launch NZ Aotearoa Neuro-Oncology Society, which brings together patients, clinicians and researchers who volunteer their time with the aim of improving care and research.

“Everyone involved in the society is passionate about helping, because this is such a devastating disease, with no cure for many brain tumours."

With extended funding, he hopes to launch the national register by 2028, when the society will host a major international brain tumour conference in Auckland.

Park also runs a Translational Neuro-Oncology Lab, which is researching causes, potential diagnostic tools and treatments for brain tumours.

He was inspired to aim for the ambitious goal of establishing a brain tumour register by the work of his mentors in the Centre for Brain Research (CBR), such as Professor Sir Richard Faull, who established the CBR in 2009 and the Neurological Foundation Human Brain Bank in 1994, and Professor Mike Dragunow, who established the Hugh Green Biobank in 2011.

“I saw a need for the register, because a lot of people were talking about it.

“It was totally outside my skillset, but I believed it could be done by working with experts, largely because of the example set by Sir Richard, who has given me the most incredible support,” Park says.