Sarcoma E-News
The ASSG, as a cooperative clinical trials group, has a broad remit to the sarcoma community in Australasia. We are very proud to be able to support a wide range of research activities that will have direct impacts for patients with sarcoma and their families.
In 1998, the Australian Sarcoma Group was established by orthopaedic surgeons as a subspecialty multidisciplinary group under the Australian Orthopaedic Association. The ASG’s aims were to ensure that sarcoma clinicians were well trained and educated to treat this complex disease. The ASSG was established in 2008 when ASG clinician researchers identified the need for a sarcoma research organization, given an increasing body of research being conducted in Australia, as well as a growing interest in international and investigator-driven clinical trials. The Australasian Sarcoma Study Group (ASSG) evolved as an independent group focused on studying the nature and treatment of bone and soft tissue sarcoma. Since then, the sister groups ASG and ASSG, have met together at a combined annual scientific meeting.
As the 10 year anniversary of the ASSG and the 20 year anniversary of the ASG approaches in 2018, the membership are pleased to announce that the two organizations will formally merge and become a single group to address the needs of the sarcoma community. We look forward to an exciting time ahead for the achievements of the combined group.
Denise Caruso, PhD
Executive Officer
Australasian Sarcoma Study Group
Chair's Year in Review
It is with a great sense of accomplishment that I review the progress of ASSG stewarded by your Board over the past 12 months. Prior to doing so, I would like to express my sincere gratitude and humble thanks for the generous and selfless contribution from our directors, members of the scientific advisory committee (SAC), our staff and in particular our Executive Officer Denise Caruso. We have just passed the first anniversary of the 2016-2021 strategic plan with activity well underway in each of the four core strategies.
It is always helpful to remind ourselves of ASSG vision which is “to advocate for and to improve patient outcomes for sarcoma and related tumors through the delivery of high quality and globally recognized Australian and international basic, translational, clinical and supportive care research’. We should always test ourselves with progress against this vision. How are we going? Well, my assessment informed by the Board is that progress has been robust and encouraging. A lot has been achieved and whilst we have missed some ambitious deadlines, overall there has been good solid progress.
The most significant development over the past 12 months has been the purposeful and constructive engagement with Australian Sarcoma Group (ASG) and the agreement to merge both organizations to create a stronger and unified Australian and New Zealand sarcoma body. The agreed objective is to efficiently harness our collective resources to deliver better patient care to the sarcoma community. As discussed and agreed at the members meeting in October 2017, a sensible consultative and planned approach has been agreed with the aim of finalizing formal arrangements by the October 2018 annual meeting.
Over the past year solid progress has been made in each of the four core ASSG strategies; developing and delivering quality research; increasing awareness and recognition; funding and governance.
The highlights over the past 12 months include:
- Your Board met on four occasions in February, April, August and October 2017;
- Your Executive Committee met on eight occasions in January, March, April, May, June, July, September and December 2017;
- Progress against the strategic plan 2016-2021 was reviewed at the February, April, August and October 2017 Board and presented at the April and October SAC meetings;
- Increased direct engagement of Board and SAC members to lead aspects of the core strategies to progress agreed milestones within each respective core strategy;
- An increased focus on regular reporting of metrics including performance indicators for agreed priority areas was implemented and is now part of regular Board review;
- A robust overall annual company review of performance covering operational activities as well key strategic milestones;
- A more proactive communication strategy including use of social media;
- The approach to endorsing sarcoma centres was reviewed;
- The extension of the grant from Cancer Australia by another year as a prelude to a further three- year commitment;
- The inaugural completion of member surveys for both professional and consumer members with insightful and valuable feedback for director’s assessment;
- Progressing the 2017 Sarcoma Research Grants;
- A review of delegations and matters reserved for the Board;
- Completion of ASSG second risk management plan including policy review and contract register update;
- Inaugural adoption of code of conduct and ethical standards;
- The progress of an inaugural Board performance survey which will be reviewed and discussed at the February 2018 meeting;
- The approval of a consumer advisory panel;
- Compliance reporting review to various regulatory authorities and agencies;
- Increasing ASSG staff resources to assist with implementation of the strategic plan and provide additional operational support; and
- Progressing longer term office accommodation requirements and support
Thanks again to everyone involved in contributing to improving patient outcomes for the sarcoma community. I would like to take this opportunity to wish everyone a safe and joyous festive season.
Warm regards
Adrian Cosenza
Chair ASSG
11 December 2017
Retroperitoneal Sarcoma Registry (RESAR)
Approximately 20% of sarcomas arise in the retroperitoneum (the region at the back of the abdominal cavity). In 2013 the Transatlantic Retroperitoneal Sarcoma Working Group (TARPSWG) was established to combine data in an attempt to better understand this group of diseases. The group started as 8 institutions and together developed a nomogram for predicting disease recurrence as well as publishing a number of consensus statements related to patient care in this disease. The group has now expanded to include over 20 institutions in North America, Europe, Asia and Australia (Peter MacCallum Cancer Centre), and have commenced a prospective registry with a mutually agreed combined dataset.
David Gyorki, ASSG Board Director and a surgeon within the sarcoma service at Peter MacCallum Cancer Centre leads the program for retroperitoneal sarcoma surgery and is an active member of TARPSWG. Since January 2017 all patients treated with a new diagnosis of primary retroperitoneal sarcoma at Peter Mac have been enrolled in this registry. To date, seven institutions have commenced data collection to the registry and approximately 250 patients have enrolled internationally (18 at PMCC). It is anticipated that when all institutions have completed ethics, over 600 patients will be recruited to the registry annually.
At Peter Mac, we have established a dedicated fortnightly retroperitoneal sarcoma registry meeting attended by radiology, pathology, clinical and research nursing staff as well as members of the surgical and radiation oncology teams to discuss each patient in detail and ensure the fidelity of the data for entry into the registry. The dataset is extensive collecting detailed information regarding patient demographics, imaging, extent of surgical resection, perioperative data, (neo)adjuvant therapy, histopathology including immunohistochemistry and outcome. The registry is currently stored at each participating centre, and we are grateful to Jasmine Mar from the ASSG for her efforts with data entry and storage.
The TARPSWG group meets twice a year, at the meetings of the Society of Surgical Oncology and Connective Tissue Oncology Society. At the recent meeting of CTOS, the group discussed various aspects of the registry including centralisation of data and the possibility of tissue collection for translational research. There was also discussion about undertaking a randomised controlled trial of neoadjuvant therapy for patients with retroperitoneal sarcoma.
Recent TARPSWG group gathering at The CTOS 2017 Annual Meeting, Maui.
Thank you to our Donors
The ASSG would like to thank all our generous donors. 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.
We would like to especially thank the wonderful philanthropic and fundraising groups for your continued support including Hannah's Chance, Kicking Goals for Xav, the GPA Andrew Ursini Charitable Fund, Rainbows for Kate, Helen Sewell for the Johanna Sewell Sarcoma Research Grant, 70.3 for Stoney and the groups fundraising for the Leon Stone Sarcoma Research Grant, Stop Sarcoma and Kenny's Mates Sarcoma Research Support Initiative. All of us at the ASSG are very grateful for all your efforts. Thank You!!!
2017 Australian Sarcoma Annual Scientific Meeting
2017 Annual Sarcoma Meeting, which the Australian Sarcoma Group and Australasian Sarcoma Study Group jointly convene, was held in Adelaide, Australia October 13th and 14th at the Flinders University. The theme for this year’s meeting was“AYA Sarcomas: Current Scenario and the Way Forward”.
Professor Sander Dijkrsta - orthopeadic surgical oncologist Leiden University Medical Centre and Associate Professor Chandrajit P. Raut - Associate Professor of Surgery at Harvard Medical School, Associate Surgeon in the Division of Surgical Oncology at Brigham and Women’s Hospital, and Surgery Director of the Center for Sarcoma and Bone Oncology at Dana-Farber Cancer Institute, were our brilliant invited VIP speakers.
The meeting was a success by any measure with important multidisciplinary presentations with a focus on AYA sarcomas. We were pleased by a record number of delegates and are encouraged to maintain our broad appeal. The 2018 ASM will be in Perth for the first time and we look forward to seeing you there.
Associate Professor Chandrajit Raut on the evolving paradigm in retroperitoneal sarcoma management.
Professor Sander Dijkstra speaking on treatment update for the Ewings and Osteosarcoma patients.
His Excellency the Honorable Hieu Van Le, Governor of South Australia opened the 2017 Australian Sarcoma Annual Scientific Meeting.
For more conference photos, visit our Facebook page.
2017 ASM Poster Winners
Congratulations to the winners of the 2017 Dickinson-Choong Poster Award Shiloh Middlemiss, Belinda Kramer, Geoffrey B McCowage and Kenneth Hsu for their poster "Targeting tumour associated antigens expressed in Osteosarcoma and Ewings sarcoma with CAR T cells" and to the second place winners Nicholas Calvert, David Wood, Richard Carey-Smith, Evan Ingley, Sophie Sneddon and Jennifer Woodhouse for their poster "Chemosensitivity testing in soft tissue and bone sarcoma".
Save the date for the 2018 ASM
The 2018 Australian Sarcoma Annual Scientific Meeting will be held in Perth on Friday 12th and Saturday 13th of October 2018.
Sarcoma Research Grant Announcements
The ASSG is pleased to announce that we will be able to support four new sarcoma research grants for funding in 2018. These grants are directly supported by philanthropic groups that raise funds to support sarcoma research. The ASSG is extremely grateful for their ongoing support. To date the ASSG has been able to award over 1 million dollars in ASSG Sarcoma Research Grants! Thank you to our supporters.
The grants for 2018 are as follows:
- The Johanna Sewell Sarcoma Research Grant of $50,000 for one year
- The Xavier Krikori Sarcoma Research Grant of $20,000 for one year
- The Leon Stone Sarcoma Research Grant of $20,000 for one year
- Hannah's Chance Sarcoma Research Grant of $30,000 for one year
For more information and application form, please visit our website. Grant applications close 5pm on the 19th of January 2018.
The NORTH Study
ASSG and ANZCHOG (the Australian and New Zealand Children’s Haematology and Cancer Group) were successful applicants for a National Health and Medical Research grant for a clinical trial utilizing a novel agent for solid tumours with poor outcomes. This study is truly a collaborative endeavour and will recruit three cohorts of patients: Neuroblastoma, Osteosarcoma,and Rhabdoid Tumour using Histone deacetylase inhibitors. The NORTH study, therefore will recruit paediatric, adolescent and young adult patients across Australia and New Zealand. This is a true bench to bedside clinical trial as the preclinical work has been conducted in Australia with partial support from the ASSG Sarcoma Research Granting scheme. The study will run over five years and will open early in 2018.
Donate to Sarcoma Research this Christmas
As the end of the year approaches, please consider donating to sarcoma research.
Please pass this link https://donorbox.org/sarcomachristmas onto anyone you think might be interested.
ASSG is on Facebook and Twitter
ASSG is on Facebook and Twitter! Like us on Facebook and follow us on Twitter and help us raise awareness of sarcoma and grow our community.
Please visit us on facebook https://www.facebook.com/ASSGSarcoma/ and Twitter https://twitter.com/ASSG_Sarcoma
IN THIS EDITION
Message from ASSG Executive Officer
ASSG Chair's Year in Review
Retroperitoneal Sarcoma Registry (RESAR)
Thank you to our Donors
2017 Annual Scientific Meeting in Adelaide
Sarcoma Research Grant Announcements
Donate to sarcoma research this Christmas
ASSG on Facebook and Twitter
The NORTH Study
Research Brief
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
EuroEwings/RFK:
International Phase 3 trial for patients with locally advanced unresectable or metastatic Ewings sarcoma. Read more
Upcoming 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.
Next Edition
Jul 2018
T 1800 177 657 F 613 9656 5875 E contact@sarcoma.org.au W www.sarcoma.org.au