In this edition, we share with you exciting updates on our Branding | Sarcoma Research Grant Program | Clinical Trials | Consumer Advisory Panel | 2019 ANZSA ASM | National Sarcoma Database

Message from Chair of ANZSA

The period since operating under the newly formed Australian and New Zealand Sarcoma Association (ANZSA) has been productive and stimulating for all involved. I would like to express my sincere gratitude for the contribution of all and in particular, your Board of Directors who have taken on additional responsibilities in stewarding and guiding ANZSA. I encourage you to reach and engage with your directors as feedback, and robust discussion is constructive and generally leads to better outcomes. 

Your Board of Directors:

1. Jayesh Desai – Vice-Chair and Co-Chair – Scientific Advisory Committee

2. David Gyorki – Chair – Annual Scientific Meeting Organising Committee

3. Angela Hong – Co-Chair – Scientific Advisory Committee

4. Geoff McKinnon – Chair – Consumer Advisory Panel

5. Marianne Phillips – Member – Consumer Advisory Panel

6. Peter Steadman – Chair – Orthopaedic Committee

7. Adrian Cosenza – Chair of the Board

The Board has been very active with board meetings and has met on three occasions since the merger – 12th December 2018, 25th February 2019 and 24th July 2019. In addition, the Executive Committee also met three times – 6th February 2019, 1st May 2019 and 12th June 2019. Progress on implementation of the 2016-2021 Strategic Plan continues briskly with 29 of 36 milestones progressed/completed at the halfway point. The ANZSA office has been strengthened with additional staff resources in communication, administration and an in-house clinical research manager. 

Director, Peter Steadman, has superbly lead the team involved in seeking to have Australia host the International Society of Limb Salvage (ISOLS) meeting in 2023. If successful, around 1,000 attendees from all over the world are expected to attend. We will keep members informed of the progress.

Additionally, under Peter’s stewardship, a successful William F Enneking 3-day pathology course was held on February 2019. The course provided an immersive experience in basic musculoskeletal pathology, correlated with radiographic and imaging staging techniques, histologic diagnosis, and principles of treatment covering the gamut of musculoskeletal lesions.

Director, Geoff McKinnon, has provided the Board with discussion papers on long-term funding strategies and highlighted to the Board the importance of ANZSA developing an investment strategy. This is underway. Together with fellow Director, Marianne Philipps, Geoff as Chair of the Consumer Advisory Panel has lead excellent early discussions to better guide patient and community engagement. 

Director, David Gyorki, as Chair of the ASM Organising Committee and working closely with Peter Steadman has stewarded the development of an excellent scientific program for the annual meeting in Canberra on October 2019.

Angela Hong and Jayesh Desai as Co-Chairs of the Scientific Advisory Committee have prudently stewarded the busy research agenda involving the many research projects and collaborations. 

Your Board of Directors have progressed the following over the past eight months:

1. Finalised Committee Chair appointments and respective responsibilities 

2. Approved sarcoma programs in sites across Australia with communication to all sites applying underway

3. Confirmed the full year meeting dates for Board and Executive Committee

4. Reviewed and approved delegations for governance

5. Progressed the membership application process and process for admitting members well underway

6. Identified a number of further Constitutional changes

7. Reviewed and approved Committee Terms of reference 

8. Completed the Director liability insurance review

9. Approved the annual Risk review

10. Noted the Contract register review

11. Approved the annual Policy review

12. Approved the Banking provider review

13. Endorsed the way forward with the Code of Conduct and ethics review

In addition, directors have been closely involved with reviewing the many projects in the research portfolio. On behalf of the Board, we thank our Chief Executive Officer, Denise Caruso, and her team for the wonderful support and energy in progressing the many activities during this period. 

I look forward to seeing you at the ASM in Canberra on 11-12 October 2019.

Adrian Cosenza  |  Chair of ANZSA

Message from CEO of ANZSA

The start of 2019 has been busy yet exciting for the Australia and New Zealand Sarcoma Association (ANZSA) team. Now operating as ANZSA since the merger of the Australasian Sarcoma Study Group (ASSG) and the Australian Sarcoma Group (ASG), we have expanded the team to oversee ANZSA’s clinical trials and research projects, and branding and communications work.

We have also updated our branding and unveiled our new logo and our new website. We were pleased that our new branding was also reflected beautifully in our Sarcoma Awareness Month campaign throughout July.

ANZSA’s research aims continue to be the main focus of our activities. We look forward to opening a study with our Dutch colleagues soon, and three other clinical trials are in development for the next 12 months.

Lastly, we were encouraged by the number of fundraising activities for sarcoma research in the first half of the year, and we thank all our partners, sponsors and members for their continued support, generosity, and trust in us and the work we do. 

Dr Denise Caruso  |  CEO of ANZSA

New ANZSA Branding

New Website

We have a new website (www.sarcoma.org.au). This user-friendly website has been designed to cater to the whole sarcoma community. Whether you are a health professional or a consumer, this website is a good resource and has all the information you are looking for.

New Logo

We also unveiled ANZSA’s new logo. Simple in nature, the logo represents the organisation’s key brand attributes. The contrast between the rounded and pointed edges symbolises our approach to being professional and science-focused yet friendly and approachable to our consumers (patients and their family members, sarcoma advocates, etc.).

While new in look, however, we pay homage to the past by retaining the double helix and colour of its identity in the logo. 

ANZSA Sarcoma Research Grant Program

In April 2019, we announced the funding of $130,000 to four Australian researchers under the annual ANZSA Sarcoma Research Grant Program. These four research projects will focus on understanding the genetics of sarcoma tumours and investigate new diagnostics and treatment options for sarcoma patients. 

2019 ANZSA Sarcoma Research Grant Program Recipients

1. The Hannah's Chance Sarcoma Research Grant was awarded to Dr Cristina Vargas. Her research title: Metastatic and recurrent soft tissue sarcomas - investigation of DNA, methylation changes and their contribution to sarcoma progression.

2. The Johanna Sewell Sarcoma Research Grant was awarded to Dr Willen Joost Lesterhuis. His research title: Local peri-operative immunotherapy soft tissue sarcoma.

3. The Leon Stone Sarcoma Research Grant was awarded to Dr Belinda Kramer. Her research title: Mass cytometry to characterise sarcoma targeted CAR T cells and inform clinical trial design.

4. The Xavier Krikori Sarcoma Research Grant was awarded to A/Prof Evan Ingley. His research title: Dedifferentiation of MDM2 amplified low-grade liposarcoma: Comparative genomics and transcriptomics to determine the mechanisms of tumour progression and precision targets.

The ANZSA Sarcoma Research Grant Program is funded by the generous sarcoma charitable foundations that were established by friends and families. 

Since the formalisation of the ANZSA Sarcoma Research Grant Program in 2011, the organisation has awarded more than 30 local researchers with grants worth over $1.2 million. For more details about the individual grant projects or interested in applying for a grant, write to us contact@sarcoma.org.au.

Clinical Trials

Since its inception in 2008, ANZSA has been involved in more than 30 sarcoma-related studies and clinical trials, both locally and internationally. We are pleased to share some updates on our ongoing projects:

1. SARC032 – 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. This is a collaboration between the sarcoma cooperative clinical trial groups in the USA and SARC and is now open for patient recruitment in three sites in Australia – Peter MacCallum Cancer Centre (VIC), Chris O’Brien Lifehouse (NSW) and Princess Alexandra Hospital (QLD).

2. NORTH – A Phase II study of panobinostat in paediatric adolescent and young adult patients with solid tumours including osteosarcoma, malignant rhabdoid tumour, and neuroblastoma. This clinical trial is funded by the NH&MRC and jointly run with ANZCHOG. It is now open for patient recruitment in four sites – Monash Children's Hospital (VIC), Starship Children's Hospital (Auckland, NZ), Princess Alexandra Hospital (QLD), Royal Adelaide Hospital (SA), Sydney Children's Hospital (NSW), Queensland Children's Hospital (QLD), Christchurch Hospital (Christchurch, NZ), Royal Children's Hospital (VIC), Chris O'Brien Lifehouse (NSW), Peter MacCallum Cancer Centre (VIC), Perth Children's Hospital (WA).

3. rEECur – International randomised controlled trial of chemotherapy for the treatment of recurrent and primary refractory Ewing sarcoma. This clinical trial is funded by a grant from CanTeen and is now open for patient recruitment in both adult and paediatric sarcoma centres across ANZ. The participating sites are Perth Children's Hospital (WA), Sydney Children's Hospital (NSW), Monash Children's Hospital (VIC), Queensland Children's Hospital (QLD), Starship Children's Hospital (Auckland, NZ), Peter MacCallum Cancer Centre (VIC), Christchurch Hospital (Christchurch, NZ), Princess Alexandra Hospital (QLD), Prince of Wales Hospital (NSW).

For more details about the projects or want to be involved in the patient recruitment process, write to us contact@sarcoma.org.au.

Consumer Advisory Panel

Our Consumer Advisory Panel (CAP) had its inaugural meeting earlier this year to discuss the CAP’s role and how it will give a strong voice to consumers within the sarcoma community. Chaired by ANZSA Director, Geoff McKinnon, the CAP plays an integral role in supporting, mentoring, advocating and training to the sarcoma community through its committee and consumer advocates.

2019 ANZSA Annual Scientific Meeting | 11-12 October 2019

Registration is now open! The 2019 ANZSA ASM will be held on 11-12 October 2019 in The Canberra Rex Hotel. We are pleased to announce that two esteemed international sarcoma specialists will join us as our international guest speakers at the ASM. They are Prof Francis Hornicek (Professor and Chief Orthopaedic Oncologist, UCLA, Los Angeles) and A/Prof Neeta Somaiah (Assistant Professor, Department of Sarcoma Medical Oncology, University of Texas MD Anderson Cancer Center, Houston, Texas). 

The theme for this year is “Individualised Care for Sarcoma Patients”. The ASM will bring well over 120 clinicians, researchers, scientific and allied health sarcoma experts. If you are an ANZSA member, you are entitled to a great deal, so don’t miss out. We look forward to seeing you there.  

If you are not a member yet, we highly encourage you to join us. We have introduced new membership categories – Ordinary Member, Associate Member, and Corresponding Member. You can now register through our website. 

National Sarcoma Database – June 2019

ANZSA supports sarcoma data collection at major sarcoma treatment centres across Australia through the ACCORD sarcoma database. This allows the collection of de-identified information such as diagnosis, treatment and outcomes on patients diagnosed with sarcoma and related tumours.

The primary goals of the sarcoma clinical data collection are:

1. To ensure the maintenance of high-quality clinical data relevant to sarcoma diagnosis and management.

2. To encourage collaborative research using sarcoma data to better understand the real-world practice of sarcoma management in Australian.

ANZSA members are eligible to utilise the information from the ACCORD sarcoma database. Expression of interest in using the database for studies and research purposes are welcome and should be directed to ANZSA’s data manager, Jasmine Mar (jasmine.mar@petermac.org).

Site Contributions to Sarcoma Database - June 2019

To access all the graphs we have, please log in to our Members Portal. You must be an ANZSA member to be able to log in. If you’re interested in joining us, please sign up as a member today.