Sarcoma Clinical Data

It is imperative to understand the impact of sarcoma on our community, both to better guide clinical research opportunities and to advocate for resources with government by providing accurate clinical data. Established mechanisms such as cancer registries are not adequately equipped to collect comprehensive clinical data due to complexities involved capturing data from the limited information available to central registries. The heterogeneous nature of sarcoma brings inconsistencies in sub-classifying what is essentially a collection of more than 80 different disease subtypes, into their specific entities. The collection of high-quality clinical data at a site level, using the same database, has been the key goal in establishing the ACCORD sarcoma database.


The ACCORD sarcoma database was designed by clinicians with sarcoma expertise. Data collection began in July 2009 as a single-site pilot study in Victoria. Since then, database installation and data entry have progressively been rolled-out to participating sites across Australia – in the Australian Capital Territory, New South Wales, South Australia, Queensland, and Western Australia – using the ACCORD database or equivalent (QooL in Queensland). Currently there are seven sarcoma centres which are participating in data collection with a dedicated data manager at each site. The database covers information from the patients’ initial presentation, diagnosis and treatment details to follow-up data on recurrence and death. Data linkage is possible through BioGrid Australia, a secure, web-based, research platform. The funding for data collection project is through a grant from Cancer Australia with a matched funding provided at each of the seven sites.

The primary goals of sarcoma clinical data collection are:

  • To ensure collection and 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 the Australian setting.

 To view a snapshot of current sarcoma data collected, please click here.


Clinical Research Using Sarcoma Data

Expressions of interest in using the database for clinical research are welcome and should be directed to the ASSG through sarcoma@petermac.org or 1800 177 657.

Clinical Database Sites

A data manager is employed at each site and a supervisor, who is a member of the ASSG, takes responsibility for data quality and integrity. Click here to view the list of ASSG database sites. A full day database workshop is held annually to run through case studies and to inform on database activities.

Need more information?

For further information or clarification or assistance with a submission please contact the ASSG through sarcoma@petermac.org or 1800 177 657

 

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