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Happy Holidays!

As 2016 comes to a close, I look back on an extraordinary year for the ASSG.  In 2016 the ASSG made great strides in advancing sarcoma research and awareness through the combined efforts of our consumer and research communities.  I want to take this opportunity to genuinely thank you for your ongoing support and tireless efforts.  I wish you all peace and joy for the new year.

Denise Caruso



Message from the ASSG Chair - Mr Adrian Cosenza

2016 Annual Scientific Meeting in Sydney

Sarcoma Research Grants

Grant Funding Announcements

Sarcoma Database update

ASSG now on Facebook and Twitter

A New Strategic Plan

Dear Members

The Board at the October 2016 meeting approved the 2016-21 strategic plan. The strategy has been developed over the past year under the stewardship of the Board of Directors, with strong contribution from the wider sarcoma community. A healthy and open discussion was also held with the Scientific Advisory Committee at the October 2016 whom assisted is refining deliverables and milestones. The full strategic plan 2016-2021 is available on our website.

The vision is “to advocate for and to improve patient outcomes for sarcoma and related tumours through the delivery of high quality and globally recognised Australian and international basic, translational, clinical and supportive care research’.

There are four core strategies:
  • Developing and delivering quality research. The aims include focusing on collaboration amongst the sarcoma community network, increasing clinical trail accruals with improved patient survival rates and deepening the portfolio of high quality human centered clinical trials with an increasing shift to translational research projects
  • Increasing awareness and recognition. The awareness of rare sarcoma cancers is low and requires a purposeful focus to educate and promote the benefits of research to the community. Recognising ASSG members involved in high quality sarcoma and tumour related research could assist in the narrative. It is vital that the sarcoma community attract and retain high quality dedicated clinical and research staff and that a pathway to fostering the next generation is facilitated.
  • Funding: ASSG can play an influencing role in communicating the narrative outlining the community and government benefits to attracting increased funding to the sector. Achieving a sustainable long term funding position is desirable.
  • Governance: Stakeholder, patients, clinicians, philanthropic and government groups expect first class governance for organisations seeking resources whether human, financial or otherwise. ASSG Board is investing heavily in improving governance of ASSG including director education and stewarding the implementation of the strategic plan and overseeing the risk profile of ASSG

The strategic plan is ambitious and aspirational. The Board is currently stewarding a sizing of the scope of the implementation of the strategic plan including a practical assessment of the resources required to implement the plan. Members will be provided with regular progress reports.

Year In Review

The first year as your Chair has been most productive and stimulating. I would like to thank all Directors who have worked tirelessly to contribute to the year’s achievements. The highlights or achievements over the past 12 months include:
•    New Chair October 2015
•    Refreshed Board Composition October 2015
•    New Constitution approved October 2015
•    New Board Charter approved October 2015
•    Formal appointments to Scientific Advisory Committee November 2015
•    Governance - Three Director education sessions – April, July & Oct 2016
•    Strategic development process – February 2016-October 2016
•    Strategic Plan 2016-2021 – approved October 2016
•    Risk Register – approved July 2016
•    Contract Register – approved July 2016
•    Policy Register – Approved July 2016
•    Delegations – Matters Reserved for Board – Approved July 2016
•    New Auditor- Approved April 2016

Finally and on behalf of he Board and the sarcoma community, I would like to thank Denise Caruso for her continued dedication, passionate advocacy and solid contribution to ASSG over the past year.

I wish everyone a safe and joyous festive season.

Warm regards

Adrian Cosenza
Chair ASSG

20 November 2016

2016 Australian Sarcoma Annual Scientific Meeting

The 2016 Annual Scientific Meeting was held October 15 and 16th in Sydney at the Garvan Institute of Medical Research and was a wonderful success.

We were delighted to have cancer survivor and former pro surfer, Richie Lovett open the 2016 annual sarcoma meeting with an inspirational and interesting account of his own cancer journey.

Richie was diagnosed with clear cell chondrosarcoma in his hip in 2005 aged 31. He underwent radical hip surgery with prosthetic implantation and was able to return to competitive surfing.

We were honoured to have three distinguished international speakers present at the meeting Dr Matt van de Rijn (Professor, Department of Pathology, Stanford University Medical Center, USA), Dr Miguel Ayerza (Surgical oncologist Italian Hospital of Buenos Aires Argentina) and Dr Lee Helman (Head of Molecular Oncology and Acting Director, Centre for Cancer Research, National Cancer Institute, USA) (pictured below).

This year we were able to award two poster prizes of $250 each.  Congratulations to both winners.

  • Dr Christine Hawkins, LaTrobe University Melbourne for her study, “Antagonising IAP Proteins To Treat Osteosarcoma
  • Dr Stephen Thompson, Prince of Wales Hospital, Randwick, and University of New South Wales,  “Neoadjuvant Chemoradiation (modified Eilber Protocol) versus Adjuvant Radiotherapy in the Treatment of Extremity Soft Tissue Sarcoma:More Bang for Your Gray?”

SAVE the DATE for the 2017 meeting in Adelaide, October 13-16th (venue to be confirmed).

Sarcoma Research Grants

The 2017 funding round for the Sarcoma Research Grants is now open with three grants on offer funded by our generous donors: 

Further information on the 2017 Sarcoma research grants can be found on our website and applications are due by 5pm Friday, 20th January 2017. 

For previous grant information and awardees please click here.

Grant Funding Announcements

The 2016 granting round through the national funding agencies Cancer Australia and the NH&MRC proved very successful for the ASSG.  Two ASSG research teams were awarded grants for studies to be opened to patients in 2017.

2016 round of the Priority-driven Collaborative Cancer Research Scheme (PdCCRS).

The Australasian Sarcoma Study Group and Cancer Australia are pleased to announce successful applicant David Thomas to the 2016 round of the Priority-driven Collaborative Cancer Research Scheme (PdCCRS). A full list of successful applicants can be found at https://canceraustralia.gov.au/research-data/research/priority-driven-research

Thomas, David - Garvan Institute of Medical Research
A surveillance protocol for people at high risk of cancer using whole body magnetic resonance
Funded by the Australasian Sarcoma Study Group

There is a significant hereditary contribution to many cancers.  Fortunately effective cancer prevention or screening strategies exist for many common tumours (for example breast and colorectal cancers). However, we do not have well established screening or prevention strategies for cancer prone syndromes that affect multiple organs.  Li Fraumeni syndrome (LFS) is a devastating syndrome caused by germline variants in the TP53 gene and characterised by high cancer risk at multiple body sites.  Previously, clinical testing for TP53 has been limited predominantly due to clinical nihilism, however testing rates are increasing as sequencing costs drop and genomic cancer research increases. TP53 mutation carriers identified by having a family history of cancer have a 50% chance of developing cancer by age 30 and 90% by age 60.  The most common malignancies are sarcomas, breast, brain and adrenocortical cancers.  There is currently no nationally agreed cancer risk management strategy for adults with pathogenic germline TP53 variants.  We believe that a comprehensive approach to screening, using whole body magnetic resonance imaging (WB-MRI, Figure 1) will maximise screening for LFS tumours while minimising ionising radiation exposure (important in this population). We have initiated a pilot study and in the first 20 participants, three asymptomatic cancers have been detected.  The study will inform future clinical management of individuals at high multi-organ cancer risk and potentially improve outcomes for families.

NH&MRC grant

The ASSG is delighted to announce that it has been successful in being awarded an NH&MRC grant with our collaborators ANZCHOG (Australia New Zealand Children’s Haematology and Oncology Group).  The study titled “ A phase II study of panobinostat in paediatric patients with refractory solid tumour including osteosarcoma, malignant rhabdoid tumour and neuroblastoma” was awarded $811,512.40.  This clinical trial will open in 18 sites around Australia in both adult and paediatric hospitals.  Chief investigators Prof David Ashley and Dr Jayesh Desai will oversee the trial with support from clinicians and researchers.  The preliminary studies in the lab that have led to the trial reaching the clinic have been partially supported through the ASSG sarcoma research grants scheme, in particular from the GPA Andrew Ursini Charitable fund that supported associate investigator Dr Jason Cain’s research in osteosarcoma.  Congratulations team!

ACCORD sarcoma data aggregate results to feature on ASSG website in 2017

As you may be aware, the ASSG has been supporting sarcoma data collection at six major sarcoma services around Australia since 2009 using an electronic database called ACCORD (the Australian Comprehensive Cancer Outcomes and Research Database) Bone and Soft Tissue Module https://www.biogrid.org.au/page/26/data-collection-software-cancer

This database allows collection of de-identified information on patients diagnosed with bone and soft tissue tumours regarding diagnosis, treatment and outcomes. Data collection has approval by the ethics committee at each hospital site for research purposes and we now have de-identified clinical data on over  4000 patients diagnosed with bone and soft tissue tumours.

Sarcoma services participating in this activity 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 and St Vincent’s Hospital
 - Sir Charles Gairdner Hospital

For the benefit of patients and health professionals, the ASSG has decided to feature aggregate sarcoma data on our website. We will endeavour to feature this information in January 2017 and to keep our data updated at least every six months. Please check out the ASSG website for more information.

**Please note, that the data presented will not contain individual patient information, but will represent aggregate data for basic demographic and tumour characteristics from major Australian sarcoma services.

If you want more information or to access the data for research purposes please contact Susie Bae at Susie.Bae@petermac.org

ASSG is now on Facebook and Twitter

ASSG is now 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

      December 2016

Research Brief

Beyond ‘single-gene thinking’: Australian researchers uncover the complex genetic secrets of cancer risk in children and young adults
In a landmark multi-country study, Australian researchers have uncovered numerous new genetic risk factors for bone and soft-tissue sarcoma. Read more

SMOC: A pilot 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

Next Edition


July 2017

Newsletter of the Australasian Sarcoma Study Group
Peter MacCallum Cancer Centre Locked Bag 1, A’Beckett Street Melbourne 8006
T 613 9656 3605F 613 9656 5875E sarcoma@petermac.orgW www.australiansarcomagroup.org