Coming Together in Christchurch

by Chris Tse

The brain tumour community came together in Christchurch over the weekend of 17-18 May 2025 for the NZ Aotearoa Neuro-Oncology Society Annual Conference (NANOS 2025) and the Brain Tumour Support NZ 2025 Patient and Caregiver Meeting. The following week the first ever Brainy Beanies Exhibition was held at the Pūmanawa Community Gallery in the Christchurch Arts Centre. BTSNZ chair, Chris Tse, provides his highlights of the weekend’s activities.

It is hard to believe that NANOS, the society which represents the best and brightest in the field of neuro-oncology in Aotearoa, is only a little over two years old. This 2025 meeting in Ōtautahi/Christchurch was already its third annual conference, not counting the initial meeting in Auckland in February 2023 when it all started. I described that meeting as the dawn of a new era in neuro-oncology in New Zealand and it is safe to say that we are now well into the daylight of that era, with the promise of much greater things to come.

Patients Come First

For the second year running the NANOS conference organisers decided to open their annual conference with a patient session and I was honoured to co-chair this years Patient Focus session with Christchurch radiation oncologist Dr Melissa James. Melissa is a founding member of the Brain Tumour Support NZ medical advisory board and is fully committed to incorporating the patient perspective both in her work as a clinician and a researcher.

The undoubted highlights of the Patient Focus session were the two patient speakers and their caregivers. First up was Henri Kerr who gave a personal account of his experience of being diagnosed with a grade 4 astrocytoma. Henri was grateful for the excellent care that he has received from his medical team in Christchurch but also had some subtle messages about receiving his diagnosis (he was originally told his tumour looked like a meningioma), differing opinions from his specialists and the importance of maintaining hope.

Following Henri was ten-year old Caleb Jackson and his mum Alice. Caleb began by describing what it felt like to be diagnosed with an ‘optic chiasm/hypothalamic tumour – pilocytic astrocytoma, WHO Grade 1, with precocious puberty, progressive reduction in left visual acuity, and gross visual field defects that affect function’ and from then on had the audience in the palm of his hand. His mum Alice chimed in with some very poignant perspectives about what it was like having a child diagnosed with a brain tumour.

Advocacy and Brainy Beanies

I was delighted to be asked to give the conference an update on the activities of Brain Tumour Support NZ. My talk “Patient to Planet” centred around the ‘Six Pillars of Patient Advocacy” and how BTSNZ was engaged in all aspects of advocacy from working with individual patients to global awareness-raising initiatives. A copy of my slide deck is available to download here.

Our Brainy Beanies pop-up stall added a splash of colour to NANOS this year. Chief executive, Sarah Verran, reported a steady stream of buying interest among NANOS delegates. Equally satisfying was the chance to connect with the brain tumour clinicians and researchers and take the opportunity to introduce them to BTSNZ and the support we provide to patients.

The NANOS pop-up was a precursor to the inaugural Brainy Beanies Christchurch exhibition which opened on 19th May at the Pūmanawa Gallery in the Arts Centre and ran until Sunday 25th May. The week long exhibition was an amazing opportunity to introduce BTSNZ and Brainy Beanies to the people of Christchurch and connect with our many local supporters and patients. Coverage in the local media, including a digital piece by MetroNews, and a live cross on TVNZ Breakfast show generated plenty of interest over the week.

National Brain Tumour Registry

Following the Patient Focus session we received an update on the New Zealand Brain Tumour Registry from project co-leads Holly Wilson, Dr Catherine Han and Dr Thomas Park. New Zealand does not currently have a dedicated brain tumour registry which means we have to extrapolate data from other countries to estimate the incidence, prevalence and outcomes for patients here.

Brain Tumour Support NZ has been involved in the brain tumour registry project from its inception as we recognise the importance of accurate and reliable data to move research forward and achieve better outcomes for patients. Holly Wilson explained that the current available data on brain tumours comes from the New Zealand Cancer Registry (NZCR) but this registry does not count so called ‘benign’ (non-malignant) tumours which actually make up the majority of primary brain tumours. The NZCR also lacks standardisation of grade and tumour types, uses outdated histology terms, has very little molecular data and no treatment information. In Holly’s words, “it just doesn’t do it for us.”

The New Zealand Brain Tumour Registry is being developed as a nationwide database of brain tumours which will improve research opportunities, clinical decision making and policy development. It will reflect Aotearoa’s unique demographics, enabling much sought after data on brain tumour incidence and outcomes in the Māori and Pacific communities.

I’m excited to be the patient representative on the Brain Tumour Registry project team. I see my role as ensuring that the registry develops in such a way that it provides accurate information on topics which matter most to patients. The team has completed a lot of ground work learning about other clinical registries in New Zealand, studying brain tumour registries overseas and understanding the current treatment pathways for New Zealand brain tumour patients. A high profile steering committee has been appointed, which includes Carol Kruchko (founder of Central Brain Tumor Registry of the United States, CBTRUS) and Professor Lindy Jeffree (chair of the Australian brain Cancer Registry).

It has been decided to collaborate with Te Aho O Te Kahu (Cancer Control Agency) CanShare programme as the ultimate repository for the NZ Brain Tumour Registry. The next step is to build a pilot project to operate in Auckland, the centre which has the most primary brain tumours diagnosed. The team has applied for a large, multi-year platform grant which will provide the all important funding to allow this next step to proceed.

Update from GMRI Glioblastoma Clinical trial

Palmerston North radiation oncologist Dr Dorothy Lombe gave an update from the single arm, phase II clinical trial of repurposed drugs targeting the renin-angiotensin system (RAS) pathway in patients with newly diagnosed glioblastoma being conducted at the Gillies McIndoe Research Institute in Wellington.

The trial protocol involves taking a cocktail of repurposed drugs: propanolol, aliskiren, celecoxib, curcumin, metformin and quinapril in conjuntion with standard of care treatment (Stupp protocol). Patients start the cocktail at the beginning of their adjuvant temozolomide course (following the concomitant radiotherapy/temozolomide phase). This is typically two to four months following diagnosis.

Target recruitment is 75 patients and they have currently enrolled 21 patients from nine centres around New Zealand. Although 19 patients had initiated treatment, only 8 patients are currently on active treatment. Of the 11 patients who have discontinued treatment, nine discontinued due to tumour progression, four of whom have since died. Two patients withdrew of their own accord.

The primary endpoint of the trial is overall survival, with secondary endpoints of progression free survival and quality of life. While some interim survival data was presented, it was insufficient to draw any meaningful conclusions on efficacy. No data was provided on patient baseline characteristics, age, performance status etc., which I feel would have been useful.

DNA Methylation Profiling at Auckland Hospital

Auckland neuro-pathologist and BTSNZ medical advisory board member Dr Clinton Turner gave an excellent presentation on the validation of the DNA methylation profiling system at Auckland City Hospital. Methylation profiling (MP) of tumour DNA is a type of molecular testing which is increasingly being used as a diagnostic tool here and overseas. It is used alongside histology, immunohistochemistry and other molecular tests such as next generation sequencing (NGS) to obtain an accurate diagnosis for the patient. Some tumour types now require MP to obtain a diagnosis under the World Health Organisation (WHO) classification system.

Currently, New Zealand patients requiring MP need to have their samples sent overseas for testing, typically to the UK whanalysis

Some of the recent developments which make me optimistic about the future of brain tumour research are:

• Promising advances in drug delivery, for example, the use of focused ultrasound to open the blood brain barrier

• The use of AI (artificial intelligence) and big data to harvest more information from clinical research, compassionate access programs and real world data to speed up the drug development process

• Advances in diagnostics, such as liquid biopsy, which will result in faster, more accurate diagnoses, better monitoring of treatments and improved quality of life for patients and caregivers

• New, innovative therapies, such as immunotherapy, gene therapy, oncolytic viruses, targeted agents and tumour treating fields, many of which have shown efficacy in other cancer types.

The challenge for the wider brain tumour community is to build progress in these and other areas while breaking down the barriers which are slowing down or blocking progress. In New Zealand, we have particular challenges posed by chronic underfunding of health research by successive governments and the lack of a research culture in our health system. Only when our best and brightest minds can be freed up to conduct brain tumour research will we see meaningful improvements for patients.

Chris Tse
May 2025