ANZSA Sarcoma Registry 

Sarcomas and related bone and soft tissue tumours are a diverse group of over 100 different rare tumours that arise in bones and connective tissues such as muscle, fat, and cartilage. They represent a very small proportion of total cancer cases – around 1.5% of new cancer cases diagnosed each year in Australia are sarcomas. In 2024, it was estimated that 2,426 people were diagnosed with soft tissue sarcoma.1   

As with all rare cancers, the low incidence of sarcomas creates a challenge in studying the disease, as it is difficult to run large prospective studies and gather statistically significant data.  

Clinical registries have already proven to be valuable research tools in circumstances like this. Recognised by the Australian Commission for Safety & Quality in Health Care, clinical quality registries are pivotal tools for collecting and monitoring data, supporting best practices, and fostering quality improvement. Rare cancers particularly benefit from the development of reference networks and collaborative databases. 

Registries play a crucial role in enhancing patient outcomes by systematically gathering information about patients and their experiences before, during, and after treatment.

In 2008 the ACCORD (the Australian Comprehensive Cancer Outcomes and Research Database) database was established to assist with the study of various cancers. 

Designed in partnership with oncology healthcare professionals, ACCORD is a web-based application for the collection and management of information relating to cancer patients’ diagnosis, treatment and outcomes, including sarcoma patients. 

The ANZSA Sarcoma Clinical Registry will be a clinical registry for the multidisciplinary study of sarcoma and related bone and soft tissue tumour outcomes in Australia, to improve understanding of risk factors, disease and treatments through enhanced and innovative research opportunities, leading to better patient care. 

Principal Investigator Dr Susie Bae says while ACCORD has resulted in a great deal of interesting research since its inception, the new registry will enable additional types of studies. 

“ACCORD has resulted in a lot of multi-site studies, mostly retrospective observational studies, looking at treatment landscape and patterns of care. More recently, we have been collaborating with other international sarcoma networks to engage in retrospective studies on specific sarcoma subtypes. We have also worked on a data linkage study with primary care databases to explore patient referral pathways and diagnostic pathways.” she says. 

These challenges led the working group to select REDCap for the new registry, as it is a more user-friendly platform and faster to implement than the aging ACCORD software, and ANZSA is hoping this will make it easier for the participating sites to enter the data.  

“ANZSA wants to encourage multi-site projects and so we’re doing what we can to build a strong infrastructure on which the sites can keep their data collection going.” says Dr Bae. 

In addition, the last update to the sarcoma classifications in ACCORD occurred around 2013, and by the time that update was complete it was out-of-date, as a new classification had been released. 

“The old platform made it difficult to implement updates when we needed them, which has been addressed by the move to REDCap,” Dr Bae says. 

REDCap is a very well-recognised platform used by many academic institutions, both within Australia and internationally, reducing the learning curve for users of the new Sarcoma registry.  

“As the peak body for sarcoma research, ANZSA wants to ensure that the sarcoma database is built upon a secure and reliable platform, which allows efficient data entry and customisation in a cost-effective and scalable manner,” says Dr Bae. 

The decision to use REDCap was made with advice from BioGrid, whose experience and expertise with REDCap helped ANZSA determine that the platform was the best choice to enable them to achieve their research objectives.

Collecting clinical data from multiple settings will help researchers understand the biology of the tumours, as well as the treatment landscape. Further, it will support benchmarking against international standards. 

Currently, five sites are contributing data in addition to the administering site, the Peter MacCallum Cancer Centre: 

• Royal Prince Alfred Hospital, NSW
• Prince of Wales Hospital, NSW 
• Royal Adelaide Hospital, SA 
• Sir Charles Gairdner Hospital, WA 
• The Canberra Hospital, ACT 

At this stage, only patients over the age of 15 years are included in the collection as the collection sites are dedicated adult oncology sites, and pediatric sarcomas are managed by pediatric oncologists. 

Collecting clinical data presents its own unique challenges – technological and infrastructure barriers such as limited electronic medical record integration at some sites with variability across different hospitals. Retrieving the right information from the right sources requires training, and there are time constraints in chasing the data, which can often be incomplete or missing.  

The new REDCap Registry will allow more efficient ways to track the missing data and generate reports for data cleaning. BioGrid will also enable the migration of the retrospective data from the ACCORD database to the REDCap platform.  

“The completeness and accuracy of the data is obviously a priority,” says Dr Bae. “ANSZA coordinates a data cleaning exercise every 6 months so that data managers can update the data as much as possible. It’s a continuous improvement effort.” 

ANZSA also holds an annual database workshop for data managers to ensure consistency in how the data is entered. 

They have established a database working group consisting of clinicians and data managers (or site level coordinators) who are interested in working with the data. The group meets quarterly to address any issues that sites are experiencing related to the data and to discuss new project ideas.

Moving forward, the project team hopes to utilise the registry to embed patient-reported outcomes and for the purpose of clinical data entry into investigator-led clinical trials.  

“The quality data we collect should be able to be used for multiple other purposes without the need to duplicate the data entry for the same patients. That's where we're hoping to move with the REDCap platform,” commented Dr Bae. 

BioGrid has worked with ANZSA on the ACCORD database for many years, so the two organisations have a long-standing relationship. BioGrid also has significant experience with designing and establishing clinical registries.  

Dr Bae agrees. “BioGrid understands what researchers are after, but also the complexities behind the state by state differences in ethics and the governance requirements of the data usage. 

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1. https://www.cancer.org.au/cancer-information/types-of-cancer/rare-cancers/soft-tissue-sarcoma