Taranaki woman Jenny Flett has a glioblastoma, a common and aggressive cancerous brain tumour. Photo: Supplied
Brain cancer is the biggest cancer killer of people under 40 - but in New Zealand there is no register to keep track of the deadly disease.
It means there is no data to help doctors work out the best care and treatment for patients, and little chance of Kiwis joining an international clinical trial without raising tens - sometimes hundreds - of thousands of dollars.
A group of doctors and patient advocates are now volunteering their time to set up a national brain tumour register.
Taranaki woman Jenny Flett was excited by the prospect, especially if it might bring better outcomes for patients like herself.
Flett was 61 and living in Christchurch when she was diagnosed with a glioblastoma in October 2021, after suffering headaches, poor concentration and a lack of co-ordination.
She had surgery the next day and most of the mandarin-sized tumour was removed from her right front temporal lobe.
But her recovery was hampered by severe nerve pain and her three adult daughters moved to Christchurch to help Flett's husband and their father Dennis care for her.
"The surgery left me in pretty poor shape. I was readmitted to hospital with a swollen brain and severe nerve damage which impacted me in a number of ways.
"I struggled to really function probably for a good three or four months."
Flett had radiation and chemotherapy and has defied the odds, so far surviving more than three times as long as her one year prognosis.
But with such a bleak outlook, the accountant - who was forced to cut her working life short - said in those early days she scoured the internet for hope.
"When I first got diagnosed I looked into clinical trials that I could be a part of and absolutely there was nothing that applied to me locally.
"But in my reading there was a lot going on overseas that was probably worth enquiring about but not really accessible."
Researchers 'knee-capped' by lack of register
University of Auckland Centre for Brain Research brain tumour researcher Dr Thomas Park said the data held in a brain cancer register would help attract clinical trials.
"Without a registry we're sort of knee-capped in a sense where we can't actually offer that information therefore some really good, promising clinical trials can't come to New Zealand.
"And some of the patients actually raise Givealittle pages to raise money to go overseas to participate in these clinical trials when if New Zealand could bring these to New Zealand, they could just participate at home."
University of Auckland brain tumour researcher Dr Thomas Park. Photo: Supplied
Park, who is also the New Zealand Aotearoa Neuro-oncology Society co-chairperson, said New Zealand currently took data from overseas registers which do not have the same population make-up as New Zealand.
"We really want to capture all the tumours that are occurring in New Zealand," Park said.
"So when many of us do clinical research or scientific research we're basing a lot of our numbers and facts on foreign registries.
"So things that are in the US or other countries, and using those we're making decisions for New Zealand patients which we don't think is appropriate."
In a review article published in the New Zealand Medical Journal last month, Park and others in the group said studies indicated Māori were more likely to be diagnosed with aggressive meningiomas - a brain tumour that developed from membranes which could be benign or malignant.
Māori children also experienced a significantly higher incident of medulloblastoma, a cancerous brain tumour that begins at the brainstem.
These diagnoses came against a backdrop of health inequities, with specialist services largely located in bigger centres and a higher proportion of Māori living in rural areas, the article said.
It said there was an urgent need for a registry because treatment options and survival for brain tumour patients had remained largely unchanged over the past 30 years.
A national clinical registry - which Park estimates would cost about $1 million to set up and much less to maintain - would enable the collection of comprehensive and accurate data nationwide, "enhancing clinical decision-making, improving patient care and facilitating targeted research and advocacy efforts".
Park said part of the set up would include making sure the clinical records - which would only be accessed by those involved in the registry - could integrate into a single, unified software system, with each former district health board still using different systems.
It would cost about $500,000 to set up a trial in the Midlands region, which covers Waikato, Bay of Plenty, Lakes, Tairāwhiti and Taranaki.
Brain Tumour Support New Zealand chairperson Chris Tse said the charity has advocated for a brain tumour registry since 2019.
"There's no cure for the majority of brain tumours so research into new treatments including clinical trials is really the only way of improving patient outcomes," Tse said.
"So one of the first steps in solving any problem, we think, is being able to quantify it and define it and without a dedicated brain tumour registry we can't do this."
Tse said not all brain tumours were captured by other existing registries in New Zealand.
"We're missing really across the whole research spectrum where brain tumours are underfunded or under-researched.
"And particularly in clinical trials - we have a shortage of clinical trials here for brain tumour patients which is a bit of shame, because clinical trials are where the future standard of care treatments will be proven."
The Centre for Brain Research had provided seed money for the project and it was now hoped the rest could be raised philanthropically through the Neurological Foundation.
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