Information for patients and families
Understand what VCCOR means for Victorian childhood cancer patients and their families.
What are the benefits of VCCOR?
The Victorian Childhood Cancer Outcomes Registry (VCCOR) will provide a clearer and more complete picture of paediatric cancer care in Victoria by bringing together data that is already routinely collected across multiple sites and systems into one registry.
It is designed to support statewide service improvement and childhood cancer research into the long-term effects of cancer treatment.
VCCOR will also be used to inform how late effects are identified, managed, and potentially reduced for childhood cancer survivors. It has the potential to improve the treatments available to future paediatric cancer patients, and improve their care and long-term outcomes.
Keeping your data safe
Privacy is very importance to us. Data is handled in accordance with Australian Privacy Principles.
The registry database is hosted by The Royal Children’s Hospital in Melbourne, and is managed by PICS in Melbourne.
Access to this database is limited to trained clinical nurse consultants and researchers and protected in line with strict ethics and hospital protocols.
VCCOR data may be shared with cancer researchers who have approval from an accredited Ethics Committee and the VCCOR Governance Committee.
Taking Part in VCCOR
VCCOR brings together data that is already routinely collected in the care of all children and adolescents treated for cancer in Victoria. If you meet these criteria, registration is automatic, and you don’t have to do anything to be involved.
Participation in research is voluntary. You can opt-out at any time by contacting us.
Each participant has the right to access their stored information. Contact us to send a request.
Full patient and family FAQs
This registry (database) has been built to track the care and outcomes of children treated for cancer in Victoria.
It will strengthen research into how childhood cancer and its treatments affect patients throughout their journey. The information will be used to improve cancer care and outcomes for patients.
This will be done by combining data that is already regularly collected from different places and systems into one secure database.
The registry will include all children, adolescents, and young adults who:
- have a new diagnosis of cancer or relapse of a previous cancer (aged 0-25 years at time of diagnosis); and
- have their healthcare managed by the cancer department in a public hospital in Victoria.
The VCCOR is designed to bring together data that is already routinely collected across multiple treatment sites.
It stores the following information about the young person with cancer:
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- identifiable information, such as their name and hospital UR number
- other general information, such as language(s) spoken at home
- details about their diagnosis
- treatment and outcomes information
- Long Term Follow-up consultation details
- cancer diagnosis details of family members (if applicable).
Regarding family cancer diagnosis history and patterns of cancer: Members of your family who have had a cancer diagnosis will have the details of their diagnosis recorded. This information will be de-identified unless your family member is already in the VCCOR (e.g. a sibling), in which case their name and diagnosis will appear in each other’s records.
This information will help improve paediatric cancer care in the future. It will also enable research into the long-term effects of cancer treatment and will be used to inform how late effects are identified, managed, and potentially reduced for childhood cancer survivors.
The collection of family cancer diagnosis information will provide healthcare providers with potential patterns to better anticipate potential risks and tailor screening or preventive measures accordingly.
We understand your right to privacy, therefore:
- Access to this database is restricted, and data is protected according to strict ethics, hospital protocols, and the Australian Privacy Principles.
- The database is managed by the Victorian Paediatric Integrated Cancer Service (PICS).
- VCCOR data may be shared with cancer researchers only once they have approval from an accredited Ethics Committee, and the VCCOR Governance Committee.
If you meet the criteria for inclusion (see above), patient registration is automatic and you don’t have to do anything to be involved.
Participation in research is voluntary, and you can opt out anytime by contacting us.
Each participant has the right to access their stored information. Contact us to send a request.
