You are here

Australian Palliative Care Outcomes Registry

What is the Australian Palliative Care Outcomes Registry (APCOR)?

 

The Australian Palliative Care Outcomes Registry (APCOR) is a clinical quality register (CQR) which curates the dta collected through the Palliative Care Outcomes Collaboration (PCOC). APCOR provides a secure and governed pathway for access to the PCOC data.

Access to APCOR data is governed by the PCOC Data Access Policy and supporting governance documents to ensure appropriate, ethical, and privacy-conscious use. 

How to apply to access PCOC data:

Please contact APCOR, describe your project and inform them of your intent to submit a Data Release Application Form.

Please ensure that your proposed project does not duplicate existing research by reviewing:

You may also find the following documents useful:

 

Complete a PCOC Data Release Application Form. Send the completed form, your study protocol and draft HREA to the  APCOR coordinator for review.

Complete any requested amendments to your Data Release Application Form and re-submit your paperwork to APCOR.

Once your Data Release Application has been approved, you must obtain appropriate ethics and governance approvals and provide copies of these documents, including the approval letter(s) to APCOR. For more information, refer to the APCOR: Data Access and Release Guidelines.

Once the Data Guardian approves your application, the APCOR Coordinator will send you a Data Release Agreement. This needs to be signed before the data will be released to you.

Your PCOC data will be sent to you approximately 4 weeks after receiving the signed Data Release Agreement.

Unit record data will be encrypted and sent electronically to you using a secure data transfer mechanism. The password to access the file will be given to you by phone.

You are responsible for providing APCOR with annual updates on your project’s progress. You must also provide APCOR with a copy of your acknowledged Annual HREC Progress Report. Once your project is complete you will confirm that your data has been destroyed in line with your Data Release Agreement.

You must acknowledge PCOC and APCOR in any research outputs, using the following statement:

“This study uses data from the Palliative Care Outcomes Collaboration (PCOC) provided through the Australian Palliative Care Outcomes Registry (APCOR). PCOC is funded by the Australian Government Department of Health, Disability and Ageing. The authors acknowledge the contribution of participating palliative care services in the collection of these data. The interpretations and conclusions contained in this study are those of the authors and do not necessarily represent the views of PCOC or the Australian Government.”

Please provide copies of any research outputs to APCOR. These may be put on the APCOR website.