Opt-Out information

What is the ANZSA Sarcoma Clinical Registry research project about?

Sarcomas are rare tumours arising in bones and connective tissues such as muscle, fat and cartilage. Currently, there is a lack of comprehensive data regarding the risk factors and management of sarcomas and other bone and soft tissue tumours in Australia.

Registries such as the ANZSA Sarcoma Clinical Registry are a valuable way to combine information from a number of hospitals into one central location. The aim of the Registry is to use the collected and combined information to shed light on patterns of diagnosis and care, known and potential risk factors and clinical outcomes after surgical and oncological management and to identify and make improvements to help future patients.

Do I have to take part in this Registry research project?

Participation in any registry or research project is voluntary. Your decision whether to take part or not, or to take part and then withdraw, will not affect the treatment and care you receive at your hospital and will not impact on your relationship with your treating clinician, hospital or any other hospital staff. Your treatment will occur as discussed with your clinician regardless of your decision to take part in the Registry or not.

The registry is an opt-out registry. Unless you tell us otherwise your data will be included in the registry. If you do not want this to occur, please complete the opt-out form below relevant to your site and return it the address listed below.

Please send the completed form to ANZSA either at Level 1, 305 Grattan Street, Melbourne, Victoria 3000 or scan and email to contact@sarcoma.org.au

Site Opt-Out Forms

Peter MacCallum Cancer Centre

• PMCC Participant opt-out form 

Royal Prince Alfred Hospital

• RPA Participant opt-out form 

Chris O'Brien Lifehouse

• COBLH Participant opt-out form 

Prince of Wales Hospital

• POW Participant opt-out form 

The Canberra Hospital

• TCH Participant opt-out form 

Who should I contact for more information?

If you would like more information or have any questions or concerns about the Registry, please contact the site lead Registry researcher (i.e. site Principal Investigator or PI) as listed above or the Australia and New Zealand Sarcoma Association (ANZSA) at contact@sarcoma.org.au.