National Brain Tumour Register Could Bring Patients Hope

University of Auckland brain researcher Dr Thomas Park has been volunteering his time to set up a national brain tumour register.

That’s because he believes the register could offer a sliver of hope to about 2400 people diagnosed with brain tumours in Aotearoa each year.

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

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

Dr 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, says Dr Park, who runs a laboratory at the Centre for Brain Research at Waiapapa Taumatu Rau, University of Auckland.

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

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

“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,” Dr 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 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,” says Dr Park.

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

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

In 2023, he helped form 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,” Dr Park says.

If more funding can be found, he hopes to launch the national register by 2028, when the society will host a major international brain tumour conference in Auckland.

© Scoop Media