Home | About ASSG | Sarcoma Help | Sarcoma Research | Support Sarcoma Research | Events & News | Links | Contact ASSG
Sarcoma International Awareness Month

July is International Sarcoma Awareness Month and he team at the Australasian Sarcoma Study Group (ASSG) and our supporters have been busy with events around Australia to mark the event.  2015 is flying by fast and the ASSG has been working hard on achieving our goals of conducting high quality sarcoma research, and providing education and outreach.   

IN THIS EDITION

Sarcoma Awareness Month and the ASSG Mission

Consumer Perspective Article

Adolescent and Young Adult Focused Recruitment to the International Sarcoma Kindred Study

Annual Scientific Meeting in Brisbane-Registrations NOW OPEN

Our supporters

 


Sarcoma Awareness Month and the ASSG Mission

 Sarcomas are a rare group of cancers arising from bone and soft tissue, which are marked by their diversity and complexity in its biology and behaviour. Each year approximately 800 Australians are diagnosed with sarcomas, accounting for less than 1% of cancer diagnoses overall. Patients and their families affected by sarcomas face a number of challenges in receiving optimal cancer care from delays in making a correct diagnosis to a lack of readily available clinical expertise and access to effective therapies, given a limited opportunity to participate in clinical trials and even limited access to reimbursed agents. Sarcoma patients are significantly over-represented by adolescents and young adults, leading to an even greater impact on number of years of life lost to this disease, when compared to other cancers. 

Sarcoma Centres in all capital cities in Australia, are providing multidisciplinary care for patients affected by sarcoma and related tumours. The Australasian Sarcoma Study group, provides a coordinated mechanism to drive collaborative research, promote education and assist the sarcoma community in patient advocacy as a Cooperative Cancer Clinical Research Group within the Australasian region.

In the last twelve months the ASSG has sponsored and conducted six trials, some of which provided valuable opportunities for both Australian and our regional centres to participate in internationally led cooperative group trials, particularly from groups based in Europe (Euro Ewing) and North America (SARC) for the very first time. This is an important achievement that will pave the future in providing access to sarcoma trials for patients affected by these rare diseases. Through the mechanism that the ASSG provides, other sites such as those from New Zealand and Singapore have also collaborated in some of these trials that are led by investigators from the ASSG. Close international ties developed by the ASSG are likely to contribute to the global efforts in tackling rare cancers. 

Rare and complex diseases such as sarcoma present significant challenges for evaluating the quality and consistency of care delivered to our patients. The first Australian Sarcoma Guidelines were launched in early 2014, developed by the ASSG in partnership with Cancer Council Australia. The guidelines were developed through a rigorous appraisal of the literature to inform evidence-based best practice.  Ongoing efforts in updating these guidelines will hopefully provide a consensus view on sarcoma management in Australia and thereby help standardise practice.        

Currently, there are six major sarcoma services in Australia and sarcoma data collection is active at all sites. Well-annotated datasets are critical in clinical research to understand and map current heath care practice across Australia. Currently there are multiple projects in pipeline that are utilising data from the sarcoma database. Prospectively collected data are also likely to provide important background clinical information for translational research studies.

We have observed outstanding developments in understanding the molecular genetics of cancer over the past few decades. The next wave of novel therapies in sarcomas will likely continue to flow from translating the molecular findings of genomic studies and discovering potential targets in bone and soft tissue sarcomas. In parallel, developing and implementing new methodologies for well-designed clinical trials will become imperative in moving us closer to delivering truly personalized cancer care to patients affected by this rare and diverse group of cancers.

Dr Susie Bae

 

A Consumer with the Sarcoma Study Group

 

It’s almost two years since I first signed on as a consumer on the Australasian Sarcoma Study Group, a challenging yet highly rewarding experience.  Although armed with a basic background in science and involvement as a panel member for Cancer Australia’s Priority Driven Grants Scheme (it was through observing poor showings from sarcoma studies in this program that first took me to contact the group), I must admit to initially being a tad overwhelmed by the technical jargon from those first project reports.  The group is multi disciplinary and collegial, not shirking from detailed examination or review of it’s works program and this directness and openness is refreshing; with the best efforts of the Chair and group to accommodate a novice non-researcher, I soon felt welcome to contribute.

In a small way my jargon ignorance is one of the small benefits of having someone from the user-end in the group, slowing things down a tad and explaining in more tangible terms some complex studies. As a small group with a limited number of active projects in train at any time there is clear continuity with the members yet a high degree of shared ownership in the overall outcomes.

Consumers can be advocates and contributors in many ways to this process. A consumer’s perspectives come from a personal cancer journey and are often broader than a tightly defined project that is the life passion of a researcher; consumers may extend across state borders and have the luxury of exceeding the interests of a single institution or line of inquiry as they present lessons learnt from their particular circumstance. Consumers may also more often represent a holistic view as they innovate and connect outside the normal research pathways.

As a rare cancer, sarcoma may not attract the attention of others more well known, yet I was rewarded to find that the group was one of the national cancer clinical trial study groups; large and small and each with passionate consumers who are connected and supported in progressing best practice in clinical trials and research.  A facilitated network of practice shares the consumer achievements of all these groups, ensuring that potential lessons benefit us all, including future sarcoma research. Although my time on the ASSG is nearly at an end I encourage consumers to get involved in the group, its studies or trials; your perspectives are valuable and the benefits – personally and to sarcoma research are many.

Ross Pagram     


New research collaboration with CanTeen targeting adolescents and young adults (AYA)

CanTeen and the ASSG have agreed to collaborate by jointly funding increased participation of 15 to 25 year old oncology patients in the International Sarcoma Kindred Study (ISKS). 

The aim of the funding is to recruit 85 adolescent and young adult (AYA) patients and their families nationally by May 2017. The study will re-activate existing Australian sites at Royal Prince Alfred Hospital (NSW) and Peter MacCallum Cancer Centre (Victoria) and expand into new sites at Princess Alexandra Hospital (Queensland), Wesley Hospital (Queensland), Royal Adelaide (South Australia) and Hollywood Private (WA). Participants will be asked to complete a survey, provide blood samples and consent to having their health records analysed. The results from the ISKS are important for risk mitigation for families with a history of cancer in improving outcomes through early detection.

The collaboration is part of CanTeen’s Youth Cancer Services (YCS) program which provides age appropriate treatment and care for AYA patients living with cancer in five lead hospitals across Australia.  The Federal Government has funded $18million from 2013-17 for the delivery of Youth Cancer Services and a range of national initiatives, including research, linked patient datasets and developing a national health professional network.

Funding projects focused on high lethality cancers has been identified as a key priority by CanTeen. Sarcomas are a highly lethal form of cancer in the AYA population, accounting for 10% of malignant cancers in the 15 to 25 year age group, with poor survival outcomes.

CanTeen CEO Peter Orchard, said “CanTeen is delighted to be collaborating with the ASSG on the International Sarcoma Kindred Study and hopes to achieve better outcomes for young people through early detection as a result of this investment in research”.

Established in 1985, CanTeen helps young people cope with their own cancer or cancer in their family. Through CanTeen, they learn to explore and deal with their feelings about cancer, connect with other young people in the same boat and if they’ve been diagnosed themselves, CanTeen provides specialist, youth-specific treatment teams through the Youth Cancer Services.

ASSG Research Meeting June 

The ASSG held its June research meeting in Melbourne and welcomed new researchers to present to the group for the first time. In addition to the Annual Scientific meeting, the ASSG has two research meetings a year. These research meetings are invitation only and are supported by our Cancer Australia grant to promote and develop research projects for sarcoma.  These all day meetings generally consist of three parts: 1) clinical trial review and updates, where ASSG supported clinical trials are discussed and challenges and achievements addressed, 2) new concept development presentations with discussion and input from the group for further development and future conduct and, 3) sarcoma Research Grant recipients present their projects and results to the group. A few of the titles of the talks that were presented are below:

  • Targeted germline sequencing reveals novel genetic risk factors for sarcoma- D Goode

  • A review of disease surveillance and LTF for survivors of bone sarcoma-J Lewin, L Orme and S Bae

  • Antagonising IAP proteins to treat osteosarcoma-C Hawkins

  • Combinational chemotherapy and immunomodulatory strategies in osteosarcoma-M Kanasara

Additionally, at this meeting we invited organizations that are able to support our researches in specific areas such as Quality of Life / Patient Reported Outcomes research and Health Economics research, to present to our researchers.  

 The ASSG is eager to receive New Concept applications at any time.  The ASSG Fellow and the Biostatics Unit work with the investigator to begin the process of protocol development to further their ideas to be able to have a workable protocol for funding applications. Contact the ASSG office for further information.

July 2015
Research Brief
PVNS: An international clinical trial exploring the effect of nilotinib as a treatment for patients with pigmented villo-nodular synovitis / tenosynovial giant cell tumour
read more
CASPS: An international clinical trial assessing cediranib treatment in patients with metastatic alveolar soft part sarcoma
read more
LDE225: A clinical trial on LDE225 in the treatment of patients with metastatic or unresectable sarcoma CLOSED to Recruitment
read more

AYAPK: A clinical trial characterising the activity of Doxorubicin in tumour types with worse prognoses for specific gender and age populations
 CLOSED to Recruitment
read more
SMOC: A pilot study to determine whether whole body MRI is a useful screening toolfor high risk patients and their family members.
ISKS: International Sarcoma Kindred Study is a population based project investigating the familial aspects of sarcoma. 
EuroEwings/RFK: International Phase 3 trial for patients with locally advanced unresectable or metastatic Ewings sarcoma.
Next Edition

December 2015

  

The Annual Sarcoma Conference Brisbane October 17 & 18 2015

This year returns the ASSG and the ASG (Australian Sarcoma Group) back to our usual format with the Annual Sarcoma Conference to be held over two days in mid-October at the

Translational Research Institute hosted by local sarcoma experts.  In Brisbane, Dr Scott Sommerville, Dr Warren Joubert and Dr David Pryor, along with the organizing committee, have put together an interesting and multidisciplinary scientific programme under the theme “Precision Treatment in Sarcoma Care.”  We are delighted to announce that we will have three international sarcoma experts speaking at the conference.

Dr William Tap, Medical Oncologist from Memorial Sloane Kettering Medical Center NY NY

Dr David Kirsch, Radiation Oncologist from Duke University Chapel Hill North Carolina

Dr Shekhar Kumta, Surgical Oncologist from The Chinese University of Hong Kong

Registrations are NOW OPEN. http://www.australiansarcomagroup.org/2015-conference-form.html. We hope you will join us.

Our Supporters-Thank You!

The ASSG is only able to support high quality and important sarcoma research through the generous donations of our philanthropic supporters.  The ASSG office is supported by an infrastructure grant from the federal cancer agency, Cancer Australia.  This funding is critical to our functions and allows the ASSG to pledge that 100% of our donations go to conducting sarcoma research.  Every bit counts and collectively the donations are able to support important research projects to improve outcomes for sarcoma patients and their families.  Thank you for your support.  

 
 
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