Happy Holidays and Best Wishes for 2019!
The ASSG had a very BIG year in 2018, most notably merging with our partner the Australian Sarcoma Group, and forming the new organization, the Australia & New Zealand Sarcoma Association, ANZSA! ANZSA will continue the work of ASSG and ASG by continuing our research and education focus. Keep an eye out for our new logo in early 2019. The ASSG was able to secure funding for another three years with a grant from Cancer Australia. This grant provides the funding for the infrastructure of the organization, but not the research funding. Cancer Australia’s support is critical to allow ASSG/ANZSA to support sarcoma research and achieve our goals to improve outcomes for sarcoma patients and their families.
Thank you to all of you for your support and tireless efforts on behalf of the ASSG/ANZSA!
Chair ANZSA 2018 Year in Review
2018 has been a milestone year for the sarcoma community, with the former Australasian Sarcoma Study Group (ASSG) celebrating its 10th anniversary and the historic successful merger of Australian Sarcoma Group (ASG) and ASSG forming the Australia and New Zealand Sarcoma Association (ANZSA) at the annual general meeting in Perth 12 October 2018. Also, a very special thanks to founding Chair of ASSG David Thomas who resigned from the ANZSA Board late October 2018 to consolidate his focus on sarcoma research. The ASSG Board and indeed the wider sarcoma community is deeply grateful and appreciative for David’s tireless and amazing contribution over the past decade. We wish him well in the next exciting chapter.
The newly elected ANZSA Board of Directors held the first meeting on Tuesday 11 December 2018 and the following appointments to the Board were ratified:
- Chair, Adrian Cosenza
- Vice Chair and Co-Chair of Scientific Advisory Committee, Jayesh Desai
- Chair, Orthopaedic Committee, Peter Steadman
- Co-Chair of Scientific Advisory Committee (SAC) Angela Hong
- Director, Geoff McKinnon
- Director, David Gyorki
- Director, Marianne Phillips
- Company Secretary, Denise Caruso
In addition, the Board approved the appointment of Denise Caruso to the role of Chief Executive Officer. On behalf of the members, I would like to warmly welcome all directors to the newly formed ANZSA board and thank each for their respective contributions to previous bodies. A big thank you also to Denise Caruso and congratulations for her new role of Chief Executive Officer.
The Board reviewed member applications at the first meeting and this will be a standing item on the Board agenda for the next 12 months. Members are reminded and encouraged to complete the member application form and submit at your earliest convenience. The Board also reviewed and supported two education initiatives including the 2019 William F. Enneking Musculoskeletal Pathology Seminar to be held 1-3 February in Melbourne and a proposal, though very early in planning, to be actively involved in hosting or co-hosting a world meeting of the International Society of Limb Salvage in Brisbane 2023.
It is early days and many aspects of the new organisation still need to be put in place including logo, website and formal notifications. In addition, the Board will be assessing the most appropriate manner in which to update and refresh the strategy for the newly merged group. These matters are in progress.
Year in Review
It is pleasing to note that at the halfway mark of the ASSG Strategic Plan 2016-2021 24 milestones have been completed with strong progress in a further five. The depth and energy devoted to the quality research strategy is inspiring with good progress in collaborations with SARC, EuroEwings and the CASPS overseas clinical trials groups. An excellent meeting was held in November with members of the Asian Sarcoma Consortium to progress collaborations with Asian colleagues. ASSG signed a Memorandum of Understanding with ANZCHOG to ensure ongoing collaboration on clinical trials and joint ventures. The approval and commencement of the implementation of the Sarcoma Program policy saw the achievement of a key milestone; and the finalization of the Fellowship program will enable the process to encourage younger members to progress a deeper career in sarcoma research and clinical care.
In governance the Consumer Advisory Committee (CAC) has been approved and Geoff McKinnon has agreed to Chair the CAC. Consumers Amy Levings and new consumer member Natalia Dewiyani remain constructively engaged. The ASSG Board completed its first ever board effectiveness review with an overall encouraging first report card. Suggestions for improvement are being progressed. Pro bono legal support through KPMG legal was also established.
Over the past 12 months Funding activities have been very successful including GPA Ursini Charitable Fund donation for PdCCRS funding for the second year; the development of a new relationship with Cooper Rice-Brading Foundation; ongoing productive relationships with groups Hannah’s Chance, Kicking Goals for Xavier, Leon Stone Family, Renee’s Day, Rainbows For Kate, Stop Sarcoma, Johanna Sewell Memorial Trust and their subsequent donations to support sarcoma research. In addition, a Canteen Grant for the rEECur study was successfully obtained and the Cancer Australia grant for Support of Cooperative Clinical Trials for the next three years was secured with increased RIBG infrastructure funds due to the increased number of grants for ASSG administered through University of Melbourne
Finally, in the core strategy of awareness and communication increased collaboration with SARC, ANZCHOG, active membership of COSA and ACTA and the increased activities through social media platforms. The sarcoma awareness campaign was particularly effective in 2018. Increased recognition progressed through the award of three awards for outstanding contributions to sarcoma research and the establishment the annual Desai Thomas Award for Excellence in Sarcoma Research.
Thank you to all members of the sarcoma community both professional and consumer for the valuable and heartfelt contribution and remarkable progress over the past 12 months. The aligned and combined resources through ANZSA provide an excellent platform to increase community awareness of sarcoma, drive quality research and pursue education development in the coming decade.
I wish all a peaceful and safe festive season and all the best for 2019.
Australia and New Zealand Sarcoma Association
ASSG's 10 Year Anniversary
ASSG celebrated 10 years in 2018 and this remarkable milestone was marked with a celebration and reflection at the Kinghorn Cancer Centre in Sydney in August. ASSG has indeed come a long way in its first decade with much gratitude to the vision and leadership of inaugural Chair David Thomas and our second Chair Jayesh Desai and the wonderful support from Executive Officer Denise Caruso who is in her eighth year at ASSG this year.
ASSG took this opportunity to announce an annual award in honour of Professor David Thomas and Dr Jayesh Desai and to acknowledge some significant contributors for their outstanding support and service to the ASSG and sarcoma research: Prof Martin Tattersall, Mr Geoff McKinnon and Mr Marcus Boyson.
ASSG and ASG Merger
Over the last year, the Australian Sarcoma Group (ASG) and Australasian Sarcoma Study Group (ASSG) have been working towards a proposed merger of the two organisations.
We are delighted to advise that members and the board of directors of ASSG and the ASG approved the merger with a new constitution and name at our recent meetings in Perth. The new organisation will be known as the ‘Australia and New Zealand Sarcoma Association Limited’ (ANZSA).
ANZSA will remain a non-profit charitable organisation, with the purpose of improving the outcomes of patients affected by sarcoma and related tumours through research, education and advocacy.
We look forward to the transition to our new name and to sharing our new logo in the coming months and are both excited by the strength of the united group and the increased ability to better serve the sarcoma community.
Applying for ANZSA Membership
We encourage all existing members of the ASSG to now apply for ANZSA membership. Members will be notified of their membership status following a review by the Board in early 2019. Please apply for membership by filling in an ANZSA membership form.
2018 Australian Sarcoma Group Annual Scientific Meeting
The Australian Sarcoma Group 2018 Annual Scientific Meeting was held Friday 12th October – Saturday 13th October 2018 at the Pan Pacific, Perth. The theme for the meeting was: Collaboration and Innovation: The multidisciplinary approach to sarcoma care. The meeting brings together clinicians and researchers of all disciplines, as well as scientific and allied health sarcoma experts.
The two international guest speakers were Robin Jones, The Royal Marsden (UK) who is medical oncologist with a specialist interest in bone and soft tissue sarcomas and Rob Pollock, Royal National Orthopedic Hospital (UK), a consultant sarcoma surgeon who specialises in hip and knee surgery as well as bone and soft tissue tumours.
Congratulations to the winners of the 2018 Dickinson-Choong Poster Award at the ASSG Annual Scientific Meeting - Heyer EE, Deveson IW, Wooi D, Mercer TR and James Blackburn for their poster "Utilising RNA Capture Sequencying as a Molecular Diagnostic'
Please save the date: the 2019 ASM will be held in Canberra on Friday 11th and Saturday 12th of October. You may like to plan your trip so that you can visit Floriade - a flower and entertainment festival held annually in Canberra's Commonwealth Park featuring extensive displays of flowering bulbs.
National Sarcoma Nurse's Group
The 2018 ASM saw the inaugural meeting of the National Sarcoma Nurses Group – formed to improve and co-ordinate services provided to sarcoma clinicians and patients.
Pictured bottom row left to right: Emma Gardner - VIC / Tasmania ; Jacky Woods - Sir Charles Gairdner WA, Tanya Haynes - NSW, Vicki Moss - Royal Adelaide, SA/NT- Top row left to right: Emma Bowen- WA, Sharon Pickles - WA; Katie Thompson – NSW
Sarcoma Research Grants for 2019
Every year the ASSG is able to award ASSG Sarcoma Research Grants thanks to the generous donations of our supporters. We have four Sarcoma Research Grants for 2019
- The Johanna Sewell Sarcoma Research Grant of $50,000
- Hannah's Chance Sarcoma Research Grant of $40,000
- The Xavier Krikori Sarcoma Research Grant of $20,000
- The Leon Stone Sarcoma Research Grant of $20,000
These grants are directly supported by philanthropic groups that raise funds to support sarcoma research. To date the ASSG has been able to award over 1 million dollars in ASSG Sarcoma Research Grants! Thank you to our supporters.
Sarcoma Database Update
The ASSG has been supporting sarcoma data collection using an electronic database called ACCORD (the Australian Comprehensive Cancer Outcomes and Research Database) Bone and Soft Tissue Module since 2009.
The database captures high quality clinical data, covering information from the patients’ initial presentation, diagnosis, treatment details to follow up data on recurrence and death. Currently, six sarcoma services are participating in data collection using the ACCORD. There is comprehensive cancer data on over 7000 patients diagnosed with bone and soft tissue tumours.
A new upgraded sarcoma specific ACCORD module is currently being tested and will be implemented early in 2019. The new version will enable more accurate data capture in keeping with recent changes and updates to treatment options and revisions to the WHO classifications.
Sarcoma services participating in data collection include:
- The Canberra Hospital
- Prince of Wales Hospital
- Royal Prince Alfred Hospital and Chris O'Brien Lifehouse
- The Royal Adelaide Hospital
- Peter MacCallum Cancer Centre
- Sir Charles Gairdner Hospital
The database section on the ASSG website has been recently updated with new aggregate data from all sites. Please see the ASSG website for more information. The data presented on the website do not contain individual patient information, but represent aggregate results on basic demographic and tumour characteristics.
If you would like more information on sarcoma data or to access the data for research purposes please contact Dr Susie Bae at Susie.Bae@petermac.org
New Trials Open
SARC032 - A Phase II Randomized Controlled Trial of Neoadjuvant Pembrolizumab with Radiotherapy and Adjuvant Pembrolizumab in Patients with High-Risk, Localized Soft Tissue Sarcoma of the Extremity
NORTH – A Phase II Study of Panobinostat in Paediatric, Adolescent and Young Adult Patients with Solid Tumours Including Osteosarcoma, Malignant Rhabdoid Tumour/Atypical Teratoid Rhabdoid Tumours and Neuroblastoma.
rEECur - International Randomised Controlled Trial of Chemotherapy for the Treatment of Recurrent and Primary Refractory Ewing Sarcoma
Thank You to our Donors and Supporters
The ASSG would like to thank all our generous donors for their significant contributions and donations to the ASSG. Every dollar helps and allows the ASSG to provide clinical trials and research projects for the sarcoma community and as always 100% of donations go to Sarcoma research.
Thank you to all our supporters and we wish you a happy and safe holiday season and a great NEW YEAR!
ASSG on Facebook and Twitter
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IN THIS EDITION
Message from CEO
ASSG turns 10
ASSG and ASG merger to form ANZSA
2018 Annual Scientific Meeting - Perth
Sarcoma Research Grant Announcements
Sarcoma Database Up
New ASSG Sponsored Trials
Thank You to Donors
ASSG on Facebook and Twitter
SMOC: A study to determine whether whole body MRI is a useful screening tool for high risk patients and their family members. Read more
ISKS: International Sarcoma Kindred Study is a population based project investigating the familial aspects of sarcoma. Read more
International Phase 3 trial for patients with locally advanced unresectable or metastatic Ewings sarcoma. Now closed to recruitment Read more
Newly opened Trials
SARC32: A Phase II Randomised Controlled Trial of Neoadjuvant Pembrolizumab with Radiotherapy and Adjuvant Pembrolizumab in Patients with High-Risk, Localised Soft Tissue Sarcoma of the Extremity.
rEECur: An International Randomised Controlled Trial of Chemotherapy for the Treatment of Recurrent and Primary Refractory Ewing Sarcoma.
NORTH:A Phase II Study of Panobinostat in Paediatric, Adolescent and Young Adult Patients with Solid Tumours Including Osteosarcoma, Malignant Rhabdoid Tumour/Atypical Teratoid Rhabdoid Tumours and Neuroblastoma.