Last month twin brothers, Jonathan and Benjamin Siero, embarked on a monumental 3500km bike ride from Fremantle to Melbourne to honour their stepfather who was diagnosed with brain cancer in 2021 and raise much needed funds for research.
Brain cancer can affect anyone and everyone, even those closest to you. I’m looking to bring awareness to brain cancer and hopefully reach our fundraising target to support the Brain Cancer Collective - Jonathan Siero.
Sisters, Jenny Tierney & Melissa Peros, took on their epic cycle challenge from home. Riding 1528kms non-stop on their beloved father’s exercise bike in his memory and for all those like him, who lost their lives to brain cancer last year.
It is a cruel disease that robs you of your loved one right before your eyes, before they themselves are even aware of it, yet there is very little research into brain cancer - Melissa Peros.
The clinical trial landscape is dominated by new drugs and treatment - but what if only a small change to an already established, standard treatment could lead to better outcomes? BCBA Steering Committee member, A/Prof Craig Gedye, is leading this novel approach with the establishment of the MAGMA (Multi-Arm GlioblastoMa Australasia) clinical trial.
“We’re aiming to use multiple innovations in trial design to test changes in the way we use our existing treatments for brain cancer; changes we hope will have big impacts for future patients,” Gedye said.
The trial is currently testing temozolomide – a chemotherapy drug commonly used to treat brain cancer – and making simple adjustments to when and how it is delivered within the current treatment protocol.
“These kinds of simple questions have led to significant improvements in other cancers”, he said
“It’s changed how we recommend treatment to people with prostate cancer, ovarian cancer and other cancers”.
The MAGMA trial is currently open at hospitals across Australia for people newly diagnosed with glioblastoma (GBM). Please click here for more information.
BCBA consortium member Professor Leonie Quinn has developed the ACT’s first brain cancer biobank. The Head of Genome Science and Cancer Division at John Curtin School of Medical Research established the Canberra Brain Cancer Collaborative to enable biobanking and genomic-based brain cancer research, to benefit patients in the ACT and around the world.
“I am looking forward to building our collection and ensuring the samples are accessible to all Australian researchers as part of BCBA’s National Brain Cancer Biospecimen Register,” she said.
The new biobank will support the clinical research of Professor Quinn’s lab to better understand and identify mutations driving brain cancer and make important progress in developing new personalised brain cancer treatments.
“This will be critical for enabling targeted drug discovery research and improved outcomes for patients”.
We are delighted that BCBA’s fundraising arm, the Brain Cancer Collective (BCC), has been chosen as charity partner for the ABC’s Andrew Olle Media Lecture. The event is held annually to honour one of Australia’s most iconic broadcasters, Andrew Olle, who lost his life to brain cancer.
BCC Chair, Professor Michael Besser AM and Directors, Robyn Leonard and Sharon Bell were privileged to share the BCBA/BCC story to raise awareness and much needed funds at this prestigious media event.
Associate Professor Eng-Siew Koh brings a unique perspective to the BCBA Steering Committee. An academic radiation oncologist and Chair of the Cooperative Trials Group for Neuro-Oncology (COGNO), Koh represents the leap from research enabled by BCBA tissue banking into clinical trials.
“Moving from the lab to the patient space via clinical trials requires collaboration at the highest level – and I am honoured to be part of that team approach.”
A/Prof Koh describes her role as COGNO Chair as her biggest professional achievement. She is committed to its broad portfolio of clinical trials and driven by the intellectual challenge of research,
“I enjoy the opportunity to make a contribution to progressing knowledge and ultimately improving outcomes for brain cancer patients,” she said.
Brain Cancer Awareness Month has begun with wonderful recognition for our Founding Chair, Professor Michael Besser AM, who has been awarded the 2022 Neurosurgical Society of Australasia Medal in recognition of his extraordinary contributions to neurosurgery and the neurosurgical community.
Professor Besser spearheaded the development of the BCBA Consortium in 2015 and his leadership and knowledge have been invaluable since. He became an integral part of the vision for BCBA following his care for Lucie Leonard as her neurosurgeon.
“I’m sure we’re not the only family forever grateful for his skill and care as we came to grips with the realities of a brain cancer diagnosis,’ said BCBA Founder, Robyn Leonard.
Congratulations to Professor Besser from all at BCBA!
A massive thank you to all those who travelled down to the Southern Highlands and took to the road (braving the many potholes) to support our fundraising arm, the Brain Cancer Collective, and in turn the work of the BCBA Consortium. As our Director, Robyn Leonard says,
'These passionate cyclists are the heart and soul of our charity. We’re just so grateful for their support, particularly to Kent Williams at Entoure de Vines who organised this event in lieu of our annual 2-day Bike Ride for Brain Cancer – postponed yet again due to COVID, but hopefully back on the road in 2023.'
To all involved with the SOHN HEARTS & MINDS Investment Leaders Conference we say thank you for your valuable ongoing support for the work we do every day to bring about change in brain cancer.
Because of you we are able to keep putting in the hard yards needed to provide access to scarce tissue samples for research and build a long overdue registry of clinical data to improve the delivery of care for all brain cancer patients.
Working with BCBA members at the Sid Faithful Brain Cancer Laboratory and Cell Culture Bank at QIMR-Berghofer, Dr Lachlan Harris has received grant funding for his novel approach to tackling the deadly brain cancer, glioblastoma (GBM). Calling on his experience as a developmental biologist, Dr Harris is targeting GBM by attacking the slowly dividing or ‘sleeping’ stem cells that resist treatment and cause the tumour to recur. By forcing these cells to ‘wake up’ and divide rapidly, they become more vulnerable to chemotherapy, thereby delaying or even preventing recurrence. It’s an approach that has been shown to be effective in leukaemia, but to date has not been tested in brain cancer.
Thank you to our amazing collaborators and supporters. Despite the many challenges of the past year, BCBA has enjoyed some fantastic successes and we look forward to continuing our work with you in 2022 to bring about change in brain cancer.
Wishing everyone a happy, restful and safe holiday season.
BCBA is very proud to have this work published in the prestigious international Journal of Neuro-Oncology Practice https://doi.org/10.1093/nop/npab055
BCBA Chair, A/Prof Lindy Jeffree, led the team developing this world-first set of clinical Indicators, which will benchmark the collection of data for BCBA’s Australian Brain Cancer Registry initiative. The aim of this project is to identify, describe and measure the impact of variation and gaps in brain cancer care across Australia, with the overarching goal of ensuring that all brain cancer patients receive the best existing treatment.
BCBA Founder/Director, Robyn Leonard is still fundraising for brain cancer research because the stats haven’t changed!! For decades people diagnosed with brain cancer have faced with the same dismal outcomes.
Transitioning from clinical nutritionist to pre-clinical researcher, BCBA Steering Committee member, Prof Bryan Day, has not only gained national and international recognition for the brain cancer research program he has established at QIMR Berghofer’s Sid Faithfull Brain Cancer Research Laboratory, but also for the much sought-after GBM cell lines the lab is generating.
“These models are freely available to the scientific community” says Prof Day. “We want to make sure that brain cancer researchers have access to these materials to ignite discoveries and get new treatments for this disease”.
Prof Day and his team have been collaborating with the neurosurgeons at the Royal Brisbane and Women’s Hospital to develop a brain tumour tissue bank, collecting over 350 samples to date. It is from these specimens that the primary cell lines are derived to facilitate both their own research and that of collaborating researchers around the world.
“This work is a testament to the critical importance of biobanking in enabling next generation brain cancer research”, says BCBA’s Founder/Director Robyn Leonard.
Like many scientists, a fascination with what we don’t know led Professor Jenny Byrne to choose a career in research,
“It seemed like the only option, and it still does” she says.
A molecular oncology professor, Byrne’s passion for biobanking has seen her transition from lab researcher to Director of Biobanking for NSW Health Pathology and focus her efforts on investigating the contribution made to research by human tissue biobanks.
Prof Byrne is not only a leader in the biobanking field, but also a prominent figure in the world of science publishing. Her remarkable work in exposing fraudulent academic manuscripts was recognised with a 2017 listing in Nature’s 10 – the renowned journal’s annual list of the 10 people who mattered most in science.
Jenny’s particular interest in the networking of biobanks at a national level led to her early and ongoing involvement with BCBA. Asked about her continuing commitment to the Consortium’s work she said,
"It’s so important that biobanks and researchers can talk with each other – and it’s great to work with a group with a national vision for both brain cancer research and biobank support of research.”
“Getting paid to read, write and think” – is the best part of her job according to oneofAustralia’s leading researchers in bioethics and long-time BCBA Steering Committee member, A/Prof Wendy Lipworth.
Starting out in medicine before switching to bioethics, Lipworth has built a successful program of research at the University of Sydney. Her work, with its particular focus on biomedical and health technology innovation, has been cited in more than 1500 publications worldwide.
Her co-authored book, Medical Professionals: Conflicts and Quandaries in Medical Practice, highlights the challenges facing today’s medical professionals as they strive to make sense of the changing landscape within healthcare.
“We’re very lucky”, says BCBA Founder/Director Robyn Leonard, “Wendy is always on hand to provide advice. Her expertise has been invaluable to the Consortium these past 6 years”.
Lipworth describes the most rewarding thing about being involved with BCBA as,
“Seeing such dedicated people working tirelessly towards a goal and being able to bring my understanding of ethics to that cause”.
Organoids - they’re known as the ‘crash-test dummies’ of the research world – tiny replica organs derived from human stem cells and created in a lab dish.
BCBA consortium member and Head of the Tissue Architecture and Organ Function Laboratory at South Australia’s Centre for Cancer Biology, Dr Guillermo Gomez, is using this organoid technology as part of his lab’s novel approach to accelerating precision medicine in brain cancer – developing treatments that are targeted to individual patients according to the genomic makeup of their tumour.
“Working with samples derived from patients brings our research findings closer to translation into the clinic” he says. “This possibility is different from the past, as research models did not replicate all the details of humans' brain cancer disease”.
Gomez was drawn to the work of BCBA through the Consortium’s efforts to provide labs like his with access to the number and type of tissue samples needed to drive research. Commenting on his involvement with BCBA, Guillermo says,
“I see this as a valuable resource for brain cancer research in Australia. These efforts are precious now as we have entered the Big Data era, and we hope it serves to bring solutions to people affected by brain cancer”.
BCBA Steering Committee member, Professor Hui Gan has created and led one of the few Australian trials for patients with relapsed low and intermediate grade brain tumours. The LUMOS trial fills the void for people with these universally fatal gliomas who would otherwise have almost no access to clinical trials. But amazingly, Professor Gan doesn’t rate this achievement as his biggest contribution;
“I actually think that my biggest contribution to date has been being part of, and helping to extend, the number of people actually focused on improving outcomes for brain tumour patients and helping create collaborations between people and groups,” he said.
It’s this passion for collaboration that led him to join BCBA, bringing with him the drive to improve patient outcomes through clinical trials and translational research,
“It’s the feeling of being part of a group that is always selflessly looking out for what the neuro-oncology community needs and then pursuing that fearlessly”.
BCBA consortium member, Associate Professor David Ziegler has big plans for 2021. The paediatric oncologist at Sydney Children’s Hospital, Randwick, is expanding the Zero Childhood Cancer program, with the aim to offer complete tumour sequencing for every childhood brain cancer patient in the country. The program has so far identified the genetic basis of a child’s cancer in more than 90 per cent of cases, giving 70 per cent of participants at least one new potential treatment option.
Ziegler has been spearheading the program since it began with a local pilot in 2016. His interest in paediatric oncology was sparked early in his career, and he continues to be motivated by seeing his patients respond to a new treatment his team has developed.
David was drawn to commitment of the BCBA to inspire the best research and build productive networks,
“What I love about BCBA is that no problem is too large and nothing is impossible – obstacles are viewed as challenges that must be overcome and the focus is always on the endgame and the patients who need the investment of research and discovery”.
Against all the odds the Bike Ride for Brain Cancer (BRBC) went ahead on 19th and 20th March, with a dedicated group of 56 riders managing to complete 100kms of the 250km course despite the extreme weather conditions in NSW. The BRBC is the major fundraising event of BCBA’s charity arm, the Brain Cancer Collective. After being Covided out in 2020, the riders were more than ready to hit the road in 2021 to raise awareness of brain cancer and approximately $300,000 in funds to support the important work of BCBA.
The spirit of the event is captured in this short video.
The experience of working behind the scenes in the laboratory and face to face treating people with cancer has given Dr Ben Kong a strong drive to improve outcomes. It’s his connection to keeping the patient at the forefront that drew him to join BCBA as a consortium member,
“BCBA has a uniquely patient-centred mission which helps all those who are involved to stay focussed on the long-term vision”.
A medical oncologist at Royal North Shore Hospital & Mater Hospital Sydney and Clinical Research Fellow for the Neuro-Oncology Co-operative Trials Group (COGNO), Ben found BCBA’s role in facilitating collaboration helped him expand his horizons and connect with other researchers determined to improve outcomes for people with brain cancer.
Ben’s determination to expand his horizons has recently become literal – he is taking to the open road to cycle 250km from Sydney to the Hunter Valley as part of the annual Bike Ride for Brain Cancer next month. He will share the road with local and interstate riders, raising funds to accelerate brain cancer research.
You can support Ben's ride here.
BCBA Steering Committee member and neuropathologist, Dr Winny Varikatt, has been the driving force behind the establishment of brain cancer biobanking at Westmead. Dr Varikatt is the Senior Staff Specialist at Westmead’s Institute of Clinical Pathology & Medical Research. Her desire to become a neuropathologist and to do something to improve the treatment and outcomes of brain tumour sufferers was driven by a personal loss, and in her words, if you want to make a difference:
‘Tumour Banking is a good place to start. To make fresh tumour tissue available to researchers and one day be able to find targetable mutations that can improve the outcome of brain tumour sufferers.’
Dr Varikatt and her team recently received a $100,000 NSW Health Biospecimen Collection Grant - a major boost for this fledging brain cancer biobanking operation.
We are proud to have Winny Varikatt as part of our Consortium. BCBA was established and is run by a group of individuals who have a similar vision – collaborating to advance brain cancer research across Australia.
This month our consortium member profile includes our congratulations to Anna Nowak on her recent appointment as Pro Vice Chancellor Health and Medical Research, University of Western Australia. Anna is a leading oncologist, clinical trialist and translational researcher in the fields of neuro-oncology and mesothelioma. Named West Australian Cancer Researcher of the Year in 2018, she is also Director of the National Centre for Asbestos Related Diseases. As a custodian of a brain cancer biobank, Anna was involved in the first BCBA meeting. She is passionate about engaging in a consumer-led research agenda and working with the committed group of clinicians and researchers who make up the BCBA Consortium. In her words,
Thank you to all our collaborators and supporters – it has been a challenging year, but BCBA has made great strides in our commitment to supporting brain cancer research and patient care. We look forward to continuing our important work in 2021.
Very best wishes to all for a very Happy Christmas and a Joyful New Year.
Congratulations to A/Prof Wendy Lipworth and Prof John Simes – both recently recognised for their outstanding contributions to research. Wendy was named Australia’s leading researcher in bioethics in the recent The Australian Special Edition: Research, and John has been listed in the world’s top 2% of most cited researchers in their fields in the flagship life sciences journal – PLOS Biology. BCBA has been fortunate to have benefited from their invaluable support from Day 1 and we look forward to their involvement continuing well into the future.
At the recent Consortium Meeting, Prof Michael Besser, BCBA Chair since inception in 2015, formally announced his retirement, handing over the baton to Chair Elect A/Prof Lindy Jeffree with the words,
“Lindy I remember publishing a paper with you exactly 20 years ago! We are very lucky to have such a multi-talented and committed person taking the lead at BCBA. I firmly believe that every organization needs and benefits from change and look forward to watching BCBA continue to develop and grow with you at the helm.”
Michael was thanked for his incredible dedication to building and expanding BCBA operations over the past 6 years. Happily, he will be continuing his longtime support for BCBA as a Consortium Member and remain as Board Chair of our charity arm, the Brain Cancer Collective.
This month we profile BCBA’s staunch supporter from day 1 - Prof Michael Besser AM – Chair of both the BCBA Consortium and our charity arm, the Brain Cancer Collective. Michael is an emeritus consultant neurosurgeon at RPA and Sydney Children's Hospitals, and a clinical professor at the University of Sydney where he teaches neuroanatomy. He is the former Head of the Department of Neurosurgery at RPA, Chair of the Institute of Clinical Neurosciences and the Neurosurgical Board, President Neurosurgical Society of Australasia and Examiner in Neurosurgery RACS.
Away from the operating theatre and lecture halls, he's also made a name for himself in the sporting arena, representing Australia at eight triathlon world championships, as well as ironman events. So of course Michael is always first to saddle up for our fundraising Bike Ride for Brain Cancer. He'll be on his bike again next March to raise funds and take part in our 3rd Sydney to Hunter Valley event – proudly wearing the legend jersey he was awarded in 2019 as the oldest rider on the road.
Michael is a legend both on and off the bike, passionate about improving patient care and finding a curative treatment for brain cancer, he was honoured with the Order of Australia in 2001 for his services to medicine.
The most immediate improvement in survivorship for brain cancer patients will be achieved through optimising the use of currently available treatments. However, in the absence of reliable data on the patterns of treatment and care delivery in Australia, it is impossible to understand how current practice is impacting patient outcomes, and in turn allocate resources in the areas of greatest need.
BCBA has initiated the Australian Brain Cancer Clinical Registry (ABCR) project with the goal of creating a national collection of key data to facilitate data-driven improvements in brain cancer care and survivorship.
A/Prof Lindy Jeffree (pictured) leads a multi-institutional working group currently undertaking the extensive process of identifying (through scientific literature review) and refining (through workshops) the clinical indicators that will benchmark the collection of data to measure the quality of care across the entire trajectory of the brain cancer patient journey.
This month the group will commence a Delphi process (survey/feedback) to gain expert consensus on the final set of clinical indicators. Digital questionnaires will be sent to medical professionals, patients and carers. We look forward to your involvement with the Delphi process, which will take us another step closer to developing this important national database.
BCBA’s fundraising arm, the Brain Cancer Collective (BCC), has been awarded two $10,000 CommBank Staff Foundation Community Grants to progress BCBA’s latest projects – a National Brain Cancer Clinical Registry and Virtual Care Coordination Platform.
“This $20,000 boost to our charity’s bottom line is certainly very much appreciated in the current fundraising climate and we’re very grateful to CBA for all their support” said BCC Founding Director, Robyn Leonard.
BCC was nominated by CBA staff members, Rochelle Eldridge and Mark Leach, who provide financial and strategy planning advice to BCBA through CBA’s pro bono program, and Robynne Perry, who is actively involved in our annual Bike Ride for Brain Cancer and other fundraising activities.
Cell lines created from patient-derived glioblastoma (GBM) tumour tissue are a critical resource for researchers seeking to understand the complex biology and aggressive mechanisms driving this most malignant of brain cancers.
BCBA member biobank, the QIMR Berghofer/RBWH Brain Cancer and Cell Culture Bank, is at the forefront in the creation of these cell lines which are enabling ground breaking studies, such as the seminal work of Prof Bryan Day and his team at the Sid Faithfull Laboratory, recently published in the journal Acta Neuropathologica. The researchers used the cell lines to identify and define the role of an aggressive driver of GBM growth - the cell receptor, Dystroglycan. The team is now working to develop therapeutic antibodies to target and block the action of this deadly cell receptor.
Read more about this research in Acta Neuropathologica
BCBA's fundraising arm - the Brain Cancer Collective - has launched an Appeal to raise funds to prioritise the development of our Virtual Care Coordination Platform project.
Having a care coordinator to assess needs, make appropriate referrals, provide clinical advice and other support, is not only helpful, but crucial to providing the high quality care that enhances patient quality of life and improves survival rates. Make a tax time donation to help us connect brain cancer patients and their carers to the resources and expert clinical advice they need, regardless of where they live or what their circumstances.
The Australasian Biospecimen Network Association (ABNA) is the incorporated body for professional biobankers. The association is focused on supporting and promoting best practice biobanking in Australia and New Zealand. BCBA was honoured to be featured in the ABNA’s latest newsletter showcasing brain cancer biobanking activities across Australasia. We thank the ABNA for this opportunity to highlight the operations and innovative projects of BCBA - Australia’s first biobanking consortium .
Please click here to read the article.
This month we feature Ross Bowles – a 60yr old brain cancer survivor, Australian Masters cycling champion and one of BCBA’s greatest supporters.
Cycling has been Ross’s great strength as he deals with the after effects of his diagnosis and treatment, but his most recent exploit – a gruelling 17hr ride to the height of Mt Everest - was nothing short of incredible.
Meet Ross as he talks about brain cancer and his fundraising Everest challenge or donate here.
In the wake of the coronavirus (COVID-19) pandemic Cancer Australia has launched a dedicated hub to provide health professionals and researchers with up-to-date, evidence-based resources and guidance from Australian and international organisations.
Interim guidelines for the handling and processing of biospecimens associated with Coronavirus Disease 2019 have been released by the Centers for Disease Control and Prevention (USA).
The 2020 Bike Ride for Brain Cancer has been postponed until 19 - 20 March 2021 due to the Coronavirus pandemic. We are very grateful to our sponsors, riders and donors for maintaining their support and wish everyone well.
The recently established Alfred Brain Tumour Bio-databank is off and running with their donor recruitment. A total of 75 patients have been consented to donate tissue since June 2019, with 45 samples and associated high-quality clinical information already in the bio-databank. These tissue and data donations from patients are an incredibly valuable contribution to improving our understanding of brain tumours. This type of collaboration between clinicians, researchers and patients is what is needed to improve precision in diagnosis and treatment of brain cancer.
We welcome The Alfred Brain Tumour Bio-databank to the BCBA network!
Our 2020 event will see over 50 cyclists taking on the 2 day 240km ride from Sydney to the Hunter Valley, including one of our own, COGNO Clinical Research Fellow, Ben Kong. Ben will be riding alongside other clinicians, family and friends of brain cancer patients, as well as a number of brave individuals who are living with the disease. We hope that you will get behind their efforts by visiting our ride website and supporting a rider or making a donation.
BCBA's fundraising arm, the Brain Cancer Collective, will hold the annual 2 day 240km Bike Ride for Brain Cancer on 3rd - 4th April this year. Join our ambassadors Mike Tomalaris – SBS Sport and Niav Owens – ABC Grandstand on this boutique ride from Sydney to the Hunter Valley. Invite your family and friends to be part of the fun at the finish line long lunch at Calais Estate Winery.
Places are filling fast so get in now.
For more information and to register visit www.bikerideforbraincancer.com.au
As 2019 draws to a close and BCBA notches up 5 years in operation, we would like to take this opportunity to say thank you to our amazing collaborators and incredibly generous supporters. We look forward to continuing our journey on the road to a cure with you in 2020.
Very best wishes to all for a Happy Christmas.
A/Prof Lindy Jeffree, Clinical Lead on the BCBA National Paediatric and Adult Brain Cancer Clinical Registry project, was presented with Best Poster Award by COGNO Chair, Prof Anna Nowak, at the recent Annual Scientific Meeting of the brain cancer clinical trials group in Sydney.
Congratulations to Lindy for her presentation which was based on the very comprehensive Brain Cancer Clinical Registry Feasibility Study instigated by BCBA Founder/Director, Robyn Leonard and developed for BCBA by Health Informatics consultant, Dr Eric Browne. The project was supported by a 2018 grant from Roche Australia.
The BCBA Minimum Dataset Working Group is proud to have the Clinical Annotation Datasets for Brain Cancer Biobanking manuscript published in the September edition of the Society for Neuro-Oncology journal – Neuro-Oncology Practice. The annotation of biospecimens with clinical data is an important part of biobanking. The working group, in collaboration with BCBA's multi-disciplinary consortium members, developed the recommended brain cancer minimum datasets to guide the integration of data from multiple existing biobanks for research studies and for planning prospective brain cancer biobanking activities.
For more information click here
BCBA’s fundraising arm, the Brain Cancer Collective, will hold the annual 2 day 240km Bike Ride for Brain Cancer on 3rd and 4th April in 2020. The boutique ride takes a scenic route from Sydney to the Hunter Valley and finishes with a long lunch in the beautiful grounds of Calais Estate Winery. We hope that you will join us on the road and support our efforts to advance brain cancer research.
Register now and receive our early bird rate.
The team at the Mark Hughes Foundation (MHF) Brain Bank, located at the Hunter Medical Research Institute (HMRI), have responded to brain cancer patients wishing to donate their brains for research by establishing Australia’s first rapid post-mortem adult brain cancer biobank. The precious tumour tissue, collected within 12hrs after death, has the potential to provide researchers with a better understanding of the evolution of brain cancer - how these deadly tumours are able to adapt and evade all current treatments.
For more information click here
BCBA is delighted to have been selected as one of the 32 successful grant recipients in the recent Australian Research Data Commons (ARDC) call for applications under their 'Transformative data' program. The $50,000 grant will support BCBA's multi-disciplinary working group, under the leadership of A/Prof Lindy Jeffree (pictured), to advance the National Paediatric & Adult Brain Cancer Clinical Registry Project.
The proposed registry will capture data that will not only provide an understanding of brain cancer incidence, treatment patterns and outcomes across Australia, but also assist researchers with clinical information and facilitate registry clinical trials.
BCBA member biobank, Children’s Cancer Centre Tissue Bank in Melbourne, was involved in a multi-centre study using patient derived tissue samples to examine the development of laboratory and mouse models for diffuse intrinsic pontine glioma (DIPG) - a high grade glioma in children. These models mimic the characteristics of the original tumour making them valuable tools for research. This study provides further insight into the factors underlying the successful creation of DIPG tumour models - the sadly lacking but much-needed vehicles to facilitate research into new treatments for this aggressive paediatric brain tumour.
“We are proud to be part of collaborations such as this where tissue samples from biobanks around the world are pooled to get the significant number of samples needed to undertake this important research” said Dr Louise Ludlow, Children’s Cancer Centre Tissue Bank Manager.
Read the abstract
Following the establishment of a Brain Tumour Collaborative Working Group at Monash University, the Monash Children’s Cancer Biobank has become part of the BCBA network and we are looking forward to welcoming all brain tumour biobanks at the Monash Medical Centre and Alfred Hospital to our network as they begin their operations.
Collaboration is key to advancing brain cancer research and BCBA would like to thank Prof Terry O’Brien, Chair of the Monash University Brain Tumour Collaborative Working Group, for leading this exciting initiative.
BCBA has been generously supported by a $25,000 grant from the Robert Connor Dawes (RCD) Foundation to support its operations.
This is the third year we have received this generous contribution and we are grateful for the continued support of the RCD Foundation, which honours the memory of Robert Connor Dawes, who lost his life to ependymoma at the age of 18.
Read more about the Robert Connor Dawes Foundation.
BCBA has once again been supported by an incredible community of riders, sponsors and donors getting behind its two-day bike riding event. This year 48 riders took on the 240km challenge, raising $185,000 (and counting!) to support BCBA in advancing brain cancer research.
The 2019 event also featured a finishing line long luncheon at Calais Estate Winery, welcome relief for riders who endured 41 degree heat on their 100km final day journey.
A big thank you to all who contributed to the success of the event and ultimately supporting BCBA on the road to a cure.
BCBA is proud to welcome three neurosurgeons to our 240km Bike Ride for Brain Cancer next month. Our BCBA Chair, Professor Michael Besser, will be joined by his former senior registrar and current neurosurgical director of Gammaknife Surgery at Macquarie, Dr John Fuller and Professor Marcus Stoodley who is head of neurosurgery at Macquarie University Hospital. The three neurosurgeons are no strangers to a physical challenge; Stoodley is a keen cyclist, Besser is a veteran masters ironman and triathlete, and this year Fuller has qualified for entry into the L'Etape Championship in France held on one of the Tour de France stages.
We're thrilled to have the support of busy clinicians, raising money for BCBA! Support their efforts, make a donation:
Professor Michael Besser
Dr John Fuller
Professor Marcus Stoodley
Isabella and Marcus, who lost their young lives to brain cancer, are the namesakes of the Foundation that has been a generous supporter of BCBA and its operations. This is the third year we have received a valuable $25,000 funding grant and we are very grateful to the Directors for their continued support. The Isabella and Marcus Foundation works with researchers in Australia to develop treatments for children with brain cancer.
Read more about the Isabella and Marcus Foundation.
Merry Christmas and a Happy New Year from all at BCBA.
Thank you to all our supporters - we’ve enjoyed some fantastic successes in 2018 and look forward to sharing another productive year in 2019.
We’d love to see you in the Hunter Valley at the Bike Ride for Brain Cancer in March - as a rider, or at our finish line winery long luncheon at Calais Estate.
The Telethon Kids Institute - and home to the Brain Tumour Research Biobank Program - has recently relocated to a new state of the art research facility within the Perth Children’s Hospital. The exciting move presented no shortage of challenges, including physically transporting precious biobank specimens in specialist trucks five kilometres across town.
We asked the Brain Tumour Research team about the process and how they are enjoying their new home.
BCBA network member biobank, Queensland Children’s Tumour Bank (QCTB), contributed to a landmark paper recently published in Nature Medicine showing that paediatric glioblastoma (pGBM) and diffuse intrinsic pontine glioma (DIPG) are made of different cancerous cells that work together to invade the brain. This research offers clues on how to treat these aggressive childhood brain cancers, and highlights the importance of coordinated post-mortem brain tumour donations,
“This novel research led by our collaborator, Professor Chris Jones at the Institute of Cancer Research in London, sheds new light on how small numbers of cells within these tumours play an important role in the behaviour of the overall tumour.” said Andrew Moore, QCTB Director and BCBA Steering Group member (pictured).
“Breakthrough research like this is only possible by researchers having access to significant numbers of patient samples. When samples are rare, researchers often need to pool samples from biobanks around the world. This has certainly been the case for inoperable and incurable brain cancers such as DIPG. The Queensland Children’s Tumour Bank has been a key collaborator of Professor Jones’ for a number of years and contributed important samples for this study.”
Read the abstract
We are excited to announce the launch of a dynamic one-stop shop for researchers to search and apply for clinical samples across the entire BCBA network. The new online system will simplify the search for clinical samples and allow researchers to submit one application electronically to all member biobanks.
The interactive register captures all brain cancer biospecimens available across the national BCBA network and has the capacity for individual biobank members to regularly access the database and update their biospecimen collection information. The new system is a significant step forward in BCBA’s efforts to assist researchers to advance treatments and outcomes for brain cancer patients.
The South Australian Neurological Tumour Bank is set to triple its tumour collection rate through a new partnership with the Royal Adelaide Hospital. The tumour bank will soon receive neurological tumour tissue from the hospital, adding to the Flinders Medical Centre collection.
“We currently have approximately 180 brain and spinal cord tumour specimens” explains tumour bank coordinator Dr Rebecca Ormsby, “but this new link provides us a fantastic opportunities to expand the available resources for researchers”.
The tumour bank has also received a grant from the Neurosurgical Research Foundation to set up a comprehensive specimen and clinical information database for the tumour and blood specimens collected.
For more information contact Dr Rebecca Ormsby: SANTB@flinders.edu.au
Biobanking has been recognised as an area of focus as part of the Federal Government $1.9 billion expenditure to support Australia’s national research infrastructure over the next 12 years. Funding has been earmarked for a scoping study to determine the investments needed to maximise the broad range of biobanking activities across Australia. BCBA submitted to the development of the 2016 National Research Infrastructure Roadmap and hopes to be involved during the course of the biobanking scoping study.
Read the Government Response to the 2016 National Research Infrastructure Roadmap Research Infrastructure Investment Plan here.
The rare nature of brain cancer subtypes means that it can take many years to accumulate sufficient specimens for meaningful research. This month we highlight the contribution of the brain tumour bank at the Kolling Institute in Sydney. Established in 2003, the collection is now the largest in the BCBA Network and having recently completed a specimen audit it is probably also the most up to date. Under the direction of A/Prof Viive Howell, tissues collected and archived from donors at the Royal North Shore and North Shore Private Hospitals for over 15 years are making an invaluable contribution to both local and international research into many brain cancer subtypes.
For information on recent landmark studies and further information on the Kolling Institute Brain Tumour Bank click here
The first meeting of the Australian Brain Cancer Mission Strategic Advisory Group was hosted by the Federal Government agency, Cancer Australia, in Sydney on 3rd/4th April 2018. BCBA consortium members Anna Nowak, Lindy Jeffree, Mark Rosenthal and Robyn Leonard are members of the Strategic Advisory Group. The Group was established to provide strategic advice and guidance to support the $100 million Australian Brain Cancer Mission in achieving its objective of doubling the survival rates and improving the quality of life of patients with brain cancer over the next 10 years.
For more information on The Mission click here
$175,000 and counting - what an incredible fundraising result! To our sponsors, riders, donors and everyone involved in making this event such a resounding success, BCBA says thank you. These funds will assist us in our continuing effort to facilitate researcher access to the tissue and data that is vital to advancing brain cancer research and ultimately defeating this deadly disease. Let’s do it again! Register your interest for our next ride in 2019!
As we head into the final, very busy weeks before the launch of our Bike Ride for Brain Cancer, BCBA would like to acknowledge the support of SBS Cycling Central in promoting the event. Currently posted on their website are two videos highlighting BCBA and the ride. The first features cyclist and brain cancer survivor, Ross Bowles and the second backgrounds BCBA - the cause behind the ride.
Perth based Resource Capital Funds CEO and BCBA Bike Ride sponsor, James McClements and his wife Meredith are clocking up regular 100km training rides in preparation for their trip to Sydney to join fellow cyclists on our 2 day/250km cycling challenge. We thank them and our other sponsors, Champion Iron, EHR and Riversdale Resources for their amazing support and recognition of the importance of research infrastructure such as BCBA in advancing brain cancer research.
If you would like to join us on the road or just learn more please visit our fundraising website.
We are very excited to announce that rider registrations are now open on our new fundraising website bikerideforbraincancer.com.au The 2 day Ride from Sydney to the Hunter Valley will take place 9 – 10 March 2018. Places are limited so register now!
We plan to make it a weekend of fun for all the family and there will be many ways for non-cyclists to get involved. Make sure you stay in touch through our Facebook page @BCBAustralia as we provide updates on activities, as well as information such as booking accommodation for the Hunter Valley.
To register click here
For information regarding sponsorship click here
Newspaper journalist, Jane Hansen, has been running a campaign to push for awareness and funding for brain cancer research. The background story to BCBA’s effort to network and harmonise Australia’s fragmented paediatric and adult brain cancer biobanking operations became her focus in a recent article in the Sunday Telegraph.
To read the news item click here
This meeting held recently in Stockholm provides a global platform for comprehensive discussion and collaboration on activities important for biobanking. BCBA Steering Committee member, Professor Jenny Byrne, attended and reports that the opening address by Gregory Simon, President of the Biden Cancer Initiative, was inspirational and had attendees talking for days afterwards. However, it was Edward Dove’s presentation on international ethics review equivalency that provided her conference highlight. You can learn more about this important work here.
As for future meetings, Prof Byrne would like to see more discussion around how biobanks support research. In her words “We need to measure and compare biobank outputs more effectively and in more detail, so that we can improve how biobanks support research”.
The Directors of the Isabella and Marcus Brainstem Tumour Fund, Khushwant and Rob De Rose and Daniella and Anthony Ruberto have followed up their 2016 grant to BCBA with another $25,000 donation in 2017. This vote of confidence in BCBA and its operations is extremely valuable and we are all grateful to be the recipients of such generous and continued support from the Directors of this fund that was established to honour the memory of their children Isabella and Marcus.
This month we highlight the work of BCBA network member, the CHW Tumour Bank. Established in 1998, almost two decades of collecting rare brain tumour tissue is providing important sample contributions to significant paediatric brain cancer research such as this Canadian study into rare Atypical Rhabdoid Teratoid tumours published in Cancer Cell – emphasising why collecting rare tumours over time is vital to future understanding.
A/Prof Dan Catchpoole, who has been Head of the CHW Tumour Bank since 2001, has also recently taken on the role of ISBER Director at Large for the Indo-Pacific Rim with responsibility for supporting and growing biobanking in the entire region. Congratulations Dan from all at BCBA.
“We are on the cusp of personalised medicine for brain cancer patients which will only occur with the support provided by tissue banks.”
These are the words of Dr Sarah Olson, whose initiative and hard work in combination with the biobanking expertise of Emma Raymond has created Queensland’s first centralised repository of brain tumour tissue. The samples collected from donors in both public and private hospitals across SE Qld are now available to researchers with ethically approved projects. QBTB is yet another in the BCBA national network of biobanks dedicated to enabling and accelerating the search for better treatments and outcomes for brain cancer patients.
The return of research results and incidental findings is a hot topic worldwide in biobanking circles. BCBA’s Robyn Leonard joined pancreatic cancer researcher, Amber Johns and Australasian Biospecimen Network Association Chair, Catherine Kennedy to make up the Australian contingent on an international panel discussing this vexed issue at the recent International Society for Biological and Environmental Repositories (ISBER) conference in Toronto, Canada. BCBA will focus on developing tools to assist its member biobanks with this issue.
Whole brain tissue donated by brain cancer patients after death is one of the most valuable resources in the advancement of brain cancer research. The RPAH Neuropathology Tumour and Tissue Bank, under the direction of Dr Kimberley Kaufman and Clinical Associate Professor Michael Buckland, is one of only three sites across the BCBA national network that is set up to accept these precious gifts. The RPA Neuropathology team, alongside other qualified research teams, use the tissue to help understand the biological mechanisms involved in brain tumour progression and treatment resistance, with the ultimate goal of better outcomes and management options for patients diagnosed with brain cancer.
For RPAH Neuropathology Tumour and Tissue Bank contact details visit our Donate Tissue page.
2016 was a productive year in terms of global collaboration for BCBA network member the Qld Children’s Tumour Bank (QCTB). Director, Paediatric Oncologist Dr Andrew Moore and his team have made substantial contributions of samples and data to research efforts across the globe, highlighting how collaborative biobanking can result in large sample sets that facilitate real breakthroughs in research.
For brain cancer research publications supported by QCTB’s contributions in 2016 click here
For more information about QCTB visit: https://child-health-research.centre.uq.edu.au/about/services-and-facilities/queensland-children%E2%80%99s-tumour-bank
This year BCBA is the grateful beneficiary of two grants from the Robert Connor Dawes Foundation. The first, a valuable $25,000 to support BCBA’s Project Coordinator position. The second, a $4,500 travel grant to support the attendance of BCBA Founder, Robyn Leonard, at the upcoming International Society for Biological and Environmental Repositories (ISBER) Conference in Toronto. Robyn has been invited to take part in the Symposium: ‘To Tell or Not to Tell’- The Practical Aspects of Returning Research Results and Incidental Findings to Biobank Participants. For more information on the ISBER Conference see Events section below.
For more information on the RCD Foundation visit:
We begin our monthly news item series on the BCBA biobanking network with the AGOG Epidemiology Study collection. Under the direction of A/Prof Claire Vajdic, Head of Cancer Epidemiology Research Unit, Centre for Big Data Research in Health, UNSW, the study is matching glioma brain tumour patients with an unaffected close family relative to better understand the genetic, lifestyle and environmental factors causing brain cancer. Currently this study has recruited an amazing patient/sibling cohort of 600 with blood and data already collected and stored from 400 of those participants. This remarkable resource, listed on the BCBA Researchers page, is open and available to researchers with approved projects.
For more information visit: http://agog.org.au/
Networked biobanking has been identified as one of 4 priorities to advance Complex Biology in the recently released Draft 2016 National Research Infrastructure Roadmap. The Roadmap sets out Australia’s national research infrastructure priority areas for the coming decade. BCBA provided a submission in response to the earlier National Research Infrastructure Capabilities Issues Paper (see link below) and was encouraged to see this significant outcome given the breadth of the Complex Biology portfolio.
The Draft 2016 Roadmap is available for download at: https://docs.education.gov.au/node/42216
Relevant pages 55–59. Summary of all priorities page 64.
For BCBA submission go to: https://submissions.education.gov.au/Forms/National-Research-Infrastructure-Capability-Issues-Paper-Submissions/Pages/index?t=o&srl=%2FForms%2FNational-Research-Infrastructure-Capability-Issues-Paper-Submissions&k=brain+cancer+biobanking+Australia
Merry Christmas and a Happy New Year from all at BCBA.
The Blue Ribbon Panel, established to provide a research blueprint for the Cancer Moonshot project, recently delivered a report that includes their 10 recommendations for expediting progress in cancer prevention, diagnosis, and treatment over the next 5 years.
For more information visit: https://www.cancer.gov/research/key-initiatives/moonshot-cancer-initiative/blue-ribbon-panel
The BCBA Consortium Group meeting held in Sydney in conjunction with the ASNO/COGNO Conference was once again a very well attended and productive event. Thank you to our guest speaker, international expert in brain cancer research, Prof Timothy Cloughesy, Director UCLA Neuro-Oncology Program. The data collection at UCLA will be our inspiration as BCBA works to provide clinical data collection guidelines for our network of brain cancer biobanks.
BCBA has received a $74,500 grant from the Mark Hughes Foundation to further our efforts in providing researchers both nationally and internationally with the resources they need to advance brain cancer research. This grant will assist BCBA to continue the development of our recently established national brain cancer biospecimen register as we work towards creating the largest centralised registry of brain cancer tissue and data in the world.
The NSW Biobank Certification Program aims to improve and harmonise biobanking standards through education and communication of best practices and Standard Operating Procedures. BCBA has registered for this NSW program as a virtual biobank hub and will proceed with certification when it becomes available in Spring 2016. Our member biobanks in NSW are encouraged to register separately.
Member biobanks outside NSW are encouraged to express interest in the program by emailing email@example.com and to register once the NSW pilot phase of the program is completed and the full program is rolled out nationally.
For more information and to register please visit the official website http://nsw.biobanking.org/
We would like to introduce our latest supporters Khushwant and Rob De Rose and Daniella and Anthony Ruberto -Directors of the Isabella and Marcus Brainstem Tumour Fund. BCBA is very grateful not only for their $25,000 donation, but their wish to provide ongoing support for the work of the BCBA consortium in both the paediatric and adult field of brain cancer research.
Thank you to the wonderful bakers and willing buyers at HP PPS Australia who raised almost $400 for BCBA at their recent morning tea event. Thank you also to Andrew Larke for putting our brain cancer research initiative on the HP PPS Australia radar and Thao Le.. not only for organising but baking as well!
BCBA Steering Committee member, Jennifer Byrne – Head Children’s Cancer Research Unit, Westmead – made the trip to Berlin in April to attend the annual meeting of the International Society of Biological and Environmental Repositories (ISBER) and has agreed to answer a few questions about what’s happening with biobanking on the international stage.
Click here to read more
BCBA continues to receive the support of Cancer Council NSW - the largest non-government funder of cancer research in Australia. In 2015 Cancer Council NSW was one of the initial seed funders of the BCBA initiative. Now this year they have provided a further $25,000 in funding. We want to thank Cancer Council NSW for their ongoing support and interest in our collaborative effort to provide researchers with the high quality tissue and data they need to advance brain cancer research.
Thank you Michael Leonard, who in lieu of gifts asked family and friends attending his 40th birthday lunch to donate to BCBA in memory of his sister, Lucie. Thank you to everyone who responded so generously to Michael’s request, your donations have raised $2035 to support the efforts of BCBA to advance brain cancer research.
Thank you to the wonderful group of young people who raised $5,770 for BCBA at their annual get together in memory of a friend who died from brain cancer. Thanks particularly to Liam O’Keeffe, owner of the Welcome Hotel in Sydney’s inner west; Katrina Bradley from Calais Estate Winery, Hunter Valley...
and Andrew Larke, auctioneer extraordinaire! A big thank you from all at BCBA for your marvellous support.
Liz and Scott Dawes are the Directors of the Robert Connor Dawes Foundation and BCBA is delighted with their recent commitment of $25,000 to support the work of our consortium. Liz and Scott created the Foundation in 2013 following the loss their son Connor to brain cancer. Our collaborative effort to advance research in both the paediatric and adult brain cancer field has attracted the interest of the Robert Connor Dawes Foundation and we look forward to continuing our relationship with them.
The 2015 Australian Biospecimen Network Association (ABNA) conference was held in Coogee in Sydney. BCBA poster was selected for a rapid fire presentation. This was presented by BCBA project coordinator, Dr Mythily Mariasegaram.
Invitations to Eugene Massi's 40th birthday dinner celebration read-Dear friends, In lieu of a gift, I ask that you make a donation in Lucie's name to Brain Cancer Biobanking Australia. Many thanks, Euge.
Eugene, BCBA would like to thank you for your very generous gesture of support. Yours is our first donor event and the $1225 raised marks an important beginning to fundraising events for this significant research initiative.