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.
30 October 2020
Brain Cancer Biobanking Australia (BCBA) will hold its annual meeting of consortium members virtually this year on 30th October 2020 at 3:00-4:00pm.
19th - 20th March 2021
BCBA’s fundraising arm, the Brain Cancer Collective, will now hold its annual 2 day 240km Bike Ride for Brain Cancer on 19th and 20th March in 2021. The riders will regroup for the boutique event that 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 support our efforts to advance brain cancer research by visiting our website and supporting a rider or making a donation.
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