International Sarcoma Awareness Month
July is the international Sarcoma Awareness Month. We invite you to share with us your events and happenings to raise awareness of sarcoma in the wider community. The ASSG has had a Facebook campaign highlighting ASSG researchers and staff. We look forward to bringing more profiles and highlights to you in the coming weeks and months.
As we hit the middle part of the year I am amazed at the progress that the ASSG and sarcoma community have accomplished in 2017. The ASSG awarded three Sarcoma Research Grants for over $100,000 (details can be seen under “Sarcoma Research Grant Announcements” in this newsletter). We look forward to hearing about their results as the studies progress.
The ASSG’s ongoing collaborations have been fruitful. We are soon to open a clinical trial with our sister organization, SARC in the USA. Denise Caruso met with the SARC investigator team at the recent American Society for Clinical Oncology meeting in Chicago. This is the world’s largest gathering of cancer experts and a great opportunity to meet face to face with the PI David Kirsch from Duke University and the other researchers. Another collaboration with an Australian group, ANZCHOG (the Australian and New Zealand Children’s Oncology Group) has resulted in the award of a NH&MRC grant to run a clinical trial for the next 5 years, with Principle Investigators Dr David Ashley and Dr Jayesh Desai. Additionally, ASSG and ANZCHOG will soon open the rEEcur Trial for Ewing Sarcoma at both adult and children’s hospitals.
Denise Caruso, ASSG Executive Officier
ASSG Scientific Advisory Committee Profiles
For Sarcoma Awareness month in July, we’re putting the spotlight on our Scientific Advisory Committee at the Australasian Sarcoma Study Group. Here in our newsletter we feature Dr Denise Caruso (Executive Officer of the ASSG) and Dr Susie Bae (Medical Oncologist & ASSG Research Fellow).
Dr Denise Caruso - Executive Officer ASSG
With an extensive background in science and medical research, Denise has achieved a BS (Honours) Biology at Simmons College in Boston, and Ph.D. in Tumour Immunology at the University of Texas MD Anderson Cancer Center in Houston. After moving to Melbourne in 2001, Denise initially worked as a Research Fellow at the Royal Children’s Hospital Children’s Cancer Centre, predominately focusing on immunotherapy clinical trials for children with solid tumours that had failed standard therapies. The immunotherapy clinical trials Denise and her research team produced, were tailor made anti-tumour vaccines for each patient. Dr Caruso was appointed as the ASSG Executive Officer 6 years ago and believes that Sarcoma’s are undeserved within the funding and awareness cancer community. She has devoted her career to try and have a positive impact for patients and families affected by Sarcoma Cancer.
Q: In your opinion, what’s the biggest issue in delivering Sarcoma patient care in Australia?
A: “There are two main issues. One is to be sure to get patients to a sarcoma program where there are multidisciplinary experts in sarcoma to manage their care. Once in that system the care delivery is not so much an issue. The second major issue is the lack of treatment options for our patients. The ASSG is primarily a research organization in order to address this need for our patients.”
Q: Why are charitable donations vital to your work?
A: “As Sarcomas are very rare, they attract few government research dollars. We are dependent on the ongoing generosity of the philanthropic community to support research in sarcomas. We are lucky to have dedicated groups to allow us to offer Sarcoma Research Grants every year to encourage and progress the research around sarcomas. Additionally we have generous supporters to allow the funding of clinical trials and larger research projects. Without the charitable donations we would not be able to conduct sarcoma research.”
Dr Susie Bae - Medical Oncologist & ASSG Research Fellow
With a knowledgeable background in medical research and valuable experience practicing as a Medical Oncologist in Melbourne, Susie has achieved a Bachelor of Medicine, FRACP, Msc (Epi). Dr Bae was previously involved in working with a rare cancer registry during her fellowship year, when in 2013 through a serendipitous opportunity guided by her mentors, she joined the ASSG and Peter MacCallum Sarcoma service. She is very grateful for the opportunity and is passionate about the multi-faceted aspects of her job as a sarcoma specialist. She also oversees the national multi-site sarcoma database at the ASSG, driving database-related projects.
Q. In your opinion, what is the biggest issue in delivering Sarcoma patient care in Australia?
A: “Geographical isolation with small patient numbers, meaning less chance to participate in clinical trials, relevant for their sarcoma sub-type.”
Q. Why are charitable donations vital to your work?
A: “Charitable donations make a critical component of our research funds. There are many aspects of what we do as a study group that are not necessarily fully funded year by year and some of these donations go a long way to get distributed to fund some of these research activities.”
Thank you to our Donors
The ASSG would like to say a BIG thank you to all of our donors. We have been especially fortunate to be the trusted recipients of these donations. We are delighted to continue to say that 100% if all donations go to Sarcoma research. Every dollar helps and allows the ASSG to provide clinical trials and research projects for the sarcoma community. Of late there have been some very creative and interesting events to raise research funds and awareness, which have been successful in achieving these aims. All of us at the ASSG are grateful for all your efforts. Thank You!!
Message from ASSG Chair
Listening to our community
Contemporary organisations must sense and respond to the community they serve to remain relevant and provide value. ASSG is no different.
Throughout 2016 and early 2017, and during discussions on shaping ASSG strategy the board discussed the importance of seeking feedback from our community. A structured approach to obtaining feedback had not previously been adopted. It was agreed that two surveys should be developed – one aimed at patients/consumers and the second at professionals. The main purpose of the surveys was to seek feedback on priorities, challenges and opportunities for improvement in the delivery of ASSG services. Although the response rates are low, the inaugural consumer (n=15) and professional (n=49) surveys completed early 2017 provide some helpful guideline to members and the Board. On behalf of the Board, I would like to express sincere thanks for the time taken by patients, consumers and professionals in providing valuable feedback.
Patient and Consumer Feedback
One of our key roles is to support the sarcoma patients and community we serve. The key message from friends and family of ASSG suggest there is more work to do to provide more purposeful patient support and that ASSG needs to be more responsive to their emerging needs. Satisfaction rates at 53% seem low relative to other similar type organisations. On the encouraging side patients/consumers provided strong feedback on the relevance and usefulness of ASSG. Over 70% have been members for less than 2 years – suggests a positive opportunity to learn and partner with the community to improve our value and relevance.
Less than 50% of those responding said that ASSG was meeting needs while 40% rate work as high quality. There is room for improvement. Less than 50% provided positive feedback on ASSG responsiveness.
There is an overwhelming desire for a forum for connection with other patients and families. The lack of a sarcoma support group when contacting the ASSG is the overall criticism. Consumers/patients are interested in participating in research. They prefer to have links for more clinical trials and support group sites, internationally.
Professionals are a deeply involved group with 87% involved in multidisciplinary trials. Membership is strongest in NSW (38%) followed by Victoria (21%) and Interesting to note that NZ membership comprises 13%. The wide range of professions involved highlights the multidisciplinary characteristic of ASSG. Professionals comprise scientists, medicine, general surgery, radiotherapy and orthopaedic surgery. Over 50% have been members for more than 10 years. Many joined ASSG for networking with colleagues, for updates on sarcoma research and to attend the ASM.
The top expectations from professionals is for ASSG to:
- Be a professional resource
- Deliver education and insights through ASM
- Provide research funding
- Maintain the national database
- Maintain sarcoma guidelines.
There is a strong interest in contributing to ASSG by providing expertise, contributing data to the national database, sarcoma research and clinical trials. Of particular note is the excellent feedback on approachability of study chairs as well as the recognition of the importance of Principal Investigator (PI) involvement at a site level to study participation and success. The barriers to trial involvement and conduct include ethics and governance. Some professionals expressed a desire for a better more coordinated working relationship with ASG.
The Board is most appreciative of the feedback. It has already been shared with the scientific advisory committee and the board. Insights and feedback are being considered as part of the execution and delivery of the strategic plan.
2017 Australian Sarcoma Annual Scientific Meeting
The 2017 Annual Sarcoma Meeting will be held on Friday October 13th and Saturday 14th at Flinders University, Adelaide.
We are delighted to be hosting three very high profile international speakers that reflect the multidisciplinary focus of the meeting.
Professor Sander Dijkstra - Professor of Orthopedics, Leiden University Medical Centre
Professor Sander Dijkstra, Professor of Orthopaedic Oncology Surgery, is a renowned orthopaedic surgeon with over 100 publications. He is an award winning lecturer as well as an innovative clinician. His clinical interests include development of novel prostheses as well as innovative surgical techniques. Prof Dijkstra is a consultant with the Dutch Bone Tumour Society and has served on the committees of several International societies.
Professor Jeremy Whelan - Professor, Department of Oncology, University College of London Hospitals and Medical School
Professor Whelan leads an extensive programme of clinical research in sarcomas. He is a chief investigator of the international randomised study for osteosarcoma, EURAMOS 1, which has completed accrual of over 2000 patients in Europe and the United States. He has also taken an active role in national cancer policy developments in his areas of expertise. He is currently a member of the National Cancer Research Institute Teenage and Young Adult Clinical Studies Group and NCRI Sarcoma Clinical Studies Group.
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.
Dr. Raut specializes almost exclusively in the multidisciplinary care of patients with soft tissue sarcoma. His research focuses on (1) clinical trials and novel therapeutics to lower locoregional recurrence rates following sarcoma resection and (2) the role of cytoreductive surgery in patients with metastatic gastrointestinal stromal tumors.
Dr. Raut is the Program Director of the Complex Surgical Oncology Fellowship at Dana-Farber Cancer Institute, Brigham and Women’s Hospital, and Massachusetts General Hospital. He is the Chair of the Program Directors Subcommittee for the Society of Surgical Oncology. He also serves as Section Editor for sarcoma in the journals Cancer and Annals of Surgical Oncology and Associate Editor for the journal Sarcoma.
Please register for the 2017 Annual Scientific Meeting here.
Sarcoma Research Grant Announcements
For 2017 we had three grants on offer funded by our generous donors. We are pleased to announce the following winners of the three grants:
- The Johanna Sewell Sarcoma Research Grant $50,000 for one year was awarded to Dr Lucy Coupland at The John Curtin School of Medical Research, ACT for her project "Novel Therapies for Osteosarcoma: RNA Pol I Inhibitors"
- The Xavier Krikori Sarcoma Research Grant $26,000 for one year was awarded to Dr Toby Trahair at The Kids Cancer Centre, Sydney Children's Hospital for his project "New therapies for ALK-rearranged inflammatory myofibroblastic tumour (IMT) and epithelioid inflammatory myofibroblastic sarcoma (eIMS)"
- Hannah's Chance Sarcoma Research Grant $30,000 for one year was awarded to Dr Hayden Snow at The Peter MacCallum Centre for his project "Characterising the immune microenvironment in adipocytic and non-adipocytic sarcoma, its impact on prognosis and the effect of radiotherapy"
ACCORD sarcoma data aggregate results now featured on ASSG website
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, aggregate sarcoma data is now available on our website. Please see the ASSG website for more information.
**Please note, that the data presented does not contain individual patient information, but represents aggregate data for basic demographic and tumour characteristics from major Australian sarcoma services.
If you would like more information or to access the data for research purposes please contact Susie Bae at Susie.Bae@petermac.org
The Cancer Australia QOL Office
The Quality of Life (QOL) Office is contracted by Cancer Australia to provide QOL Technical Services to the Australian Cancer Co-operative Clinical Trials Groups (CCTGs).
The QOL Office regularly runs free workshops for CCTG members. Our Protocol Checklist Workshop held in June was a huge success with 18 CCTG representatives bringing along 15 Protocols.
Earlier this year we also presented the webinar ‘Interpreting Quality of Life and other Patient-Reported Outcomes’. This webinar was recorded and is now available to all ASSG members.
Click here to sign-in and access the webinar recording.
ASSG members are invited to contact the QOLO Office for assistance with their Patient-Reported Outcomes research queries.
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.
In This Edition
International Sarcoma Awareness Month and Message from ASSG Executive Officer
ASSG SAC Member Profiles
Thank You to our Donors!
Message from ASSG Chair
2017 Annual Scientific Meeting in Adelaide
Sarcoma Research Grant Announcements
Sarcoma Database Update
The Cancer Australia QOL Office
ASSG on Facebook and Twitter
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
International Phase 3 trial for patients with locally advanced unresectable or metastatic Ewings sarcoma. Read more
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.