ANZSA Newsletter - December 2019
In this edition, we share with you exciting updates on our Clinical Trials | Sarcoma Awareness Month | 2019 ANZSA ASM | ANZSA Sarcoma Specialist Nurses Network | National Sarcoma Database. Read our ANZSA's Chair Year-End message here.
Message from CEO of ANZSA
2019 is truly a milestone year for ANZSA for several reasons. The successful merger between the Australasian Sarcoma Study Group (ASSG) and Australian Sarcoma Group (ASG) was the perfect opportunity to update our name, website and membership structures for the organisation.
Sarcoma research remains our focus with successful conduct of several clinical trials, ongoing development of new studies, both clinical and translational. Our sarcoma research endeavours continue to expand with new collaborations with international and national partners. 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.
Our Sarcoma Awareness Month campaign throughout July was a success with positive engagements from the public. Read more about it below.
The ANZSA team is proud of the work we do and what we have achieved this year. We remain committed to our vision and will strive to ensure better outcomes for patients in the year to come.
We thank all our partners, sponsors and members for their continued support, generosity and trust in us and the work we do.
I wish you a Happy Holiday.
Dr Denise Caruso | CEO of ANZSA
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:
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).
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 14 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), Children's Hospital Westmead (NSW), Royal Hobart Hospital (TAS), Women's and Children's Hospital (SA).
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 Peter MacCallum Cancer Centre (VIC), Monash Children's Hospital (VIC), Prince of Wales Hospital (NSW), Sydney Children's Hospital (NSW), Starship Children's Hospital (Auckland, NZ), Perth Children’s Hospital (WA), Queensland Children’s Hospital (QLD), Christchurch Hospital (NZ), Princess Alexandra Hospital (QLD), Chris O’Brien Lifehouse (NSW), John Hunter Children’s Hospital (NSW).
For more details about the projects or want to be involved in the patient recruitment process, write to us firstname.lastname@example.org.
Sarcoma Awareness Month
In July, we ran a successful awareness campaign for Sarcoma Awareness Month in support of the sarcoma community. This year we asked Australians to ‘Go Yellow Anywhere for Sarcoma Awareness’ as we wanted to highlight the word ‘anywhere’ because sarcoma is a unique cancer that can form anywhere in the body.
We had simple activities for the public to participate in, and we were delighted with the response we received throughout the month from politicians and the public. Using traditional media and social media such as Facebook, we were able to educate the public about sarcoma through our ‘Sarcoma of the Week’ initiative. We also developed some resources such as a sarcoma fact sheet with useful bite-size information for the public to download. The ANZSA team had the opportunity to present about sarcoma at the Victoria Comprehensive Cancer Centre (VCCC) where clinical professionals attended.
2019 ANZSA Annual Scientific Meeting
The 2019 ANZSA ASM in Canberra was a highlight of the year for the sarcoma community. Over 100 sarcoma specialists and consumers came together to discuss the latest diagnostic methods and treatment for sarcomas. We were honoured to have two-esteemed international guest speakers – 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) – join us at the ASM. They shared their experience in treating sarcoma patients and their involvement in clinical trials that may bring a positive outcome for patients.
Additionally, we had separate meetings with the sarcoma nurses, consumer advisory panel and the scientific advisory committee at the ASM.
The ASM was also an opportune time for our Sarcoma Research Grant Program recipients to share with the ANZSA SAC and delegates their work in the past year. We were pleased to hear that their research shows promising results so far.
ANZSA Sarcoma Specialist Nurses Network
The first official meeting of the ANZSA sarcoma specialist nurses network took place at this year’s ASM. A total of nine sarcoma specialist nurses from six states came together to:
- Plan an approach to providing consistency when directing patients to peer support group specific to sarcoma diagnosis.
- Engage ANZSA to work towards providing nursing education specific to sarcoma and challenges faced by patients diagnosed with sarcoma.
- Engage ANZSA and Rare Cancers Australia to ensure patients are receiving similar, reliable, specialist connections with other patients with a similar diagnosis.
- Approach Cancer Nurses Society of Australia (CNSA) to present at CNSA’s Annual Congress in 2020.
National Sarcoma Database – November 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:
To ensure the maintenance of high-quality clinical data relevant to sarcoma diagnosis and management.
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 (email@example.com).
Site Contributions to Sarcoma Database - November 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.
Thank You, Donors and Supporters
We want to thank all our generous donors for their significant contributions and donations towards sarcoma research. You are a collective of individuals, groups, organisations and philanthropic trusts who continuously journey with us with your giving and we cannot be more grateful. Every dollar helps and are invested in high-quality sarcoma research to find a cure.
We hope you will continue to support us in the work we do. Should you wish to donate or partner with us, find out more here.
T 1800 177 657 F 613 9656 5875 E firstname.lastname@example.org W www.sarcoma.org.au