Data and privacy
VicHip is a clinical registry led by Murdoch Children’s Research Institute (MCRI). We are firmly committed to ensuring that personal information remains private and secure.
The Australian Privacy Act and the Australian Privacy Principles govern all personal information collected by VicHip voluntarily provided by registry participants.
The information we collect and store helps us build the best possible clinical registry. It includes data such as medical images (like ultrasounds and X-rays), clinical notes, medical history, treatments, participant surveys and basic contact details so we can contact you in the future.
We keep your child's information private by removing their name and contact details and giving them a study ID number in the registry. This means that information in the database is de-identified, making it difficult for anyone to re-identify individuals.
We store your identifiable information like name, email and phone number separately from your child’s medical data and limit who can see it. We use your identifiable information to track your appointments and contact you as a part of the study.
The way we look after your information is based on best-practice worldwide. We store all information in secure environments and perform regular security testing. We apply layers of security controls to protect your data including (but not limited to) regular training and the use of standard operating procedures, secure access controls, data encryption, security monitoring, application of regular security updates, risk and security reviews, independent security testing, and network security protection.
In Victoria, you have the right to access and correct the personal information that VicHip collects about you. You can do this by contacting us at vichip@mcri.edu.au
MCRI’s privacy policy contains further information about how we handle personal information, including the use of information that we receive through our website.
If you have an enquiry about our privacy policy or a complaint regarding the handling of your personal information, please contact the MCRI Privacy Officer at:
Privacy Officer
Murdoch Children's Research Institute
Royal Children's Hospital
50 Flemington Road
Parkville VIC 3052
Email: legal@mcri.edu.au
Phone: +61 3 9936 6337
Data access and sharing
We have strict rules to protect the privacy and confidentiality of VicHip data and participants. Only authorised individuals/entities can access VicHip registry data.
VicHip researchers have daily access to VicHip data. They are employed or affiliated with MCRI and have received training in clinical research practices.
Doctors and clinicians can access their patient's data in the VicHip registry and generate site-specific and state-wide de-identified reports to help inform clinical management of hip dysplasia
VicHip shares data with the Global Hip Dysplasia Registry (GHDR) which is hosted by the British Columbia Children's Hospital Research Institute in Canada. They bring together a wide range of information about hip dysplasia from other countries. It will help researchers learn more about hip problems and hip care around the world. If you join VicHip, you agree to share your de-identified data with the GHDR.
We also share data with Generation Victoria (GenV), an MCRI-led study. Their research follows Victorian children born over two years (October 2021 - October 2023) and their parents to help find faster and better ways to predict, prevent and treat many health problems. The VicHip consent form gives you the option to be contacted by a GenV team member for more information. They will explain how to participate in GenV and how data sharing works.
Researchers can submit a request to VicHip to use de-identified data for future research projects.
Learn more about our data access governance and requests or research partnerships
Communication and privacy
This section explains our survey communication practices and how we handle your personal information.
As a registry participant, we'd like to know how your child’s health is doing and if they received good medical care. Depending on your child’s treatment and development, we might send you a survey to complete every one to four years.
VicHip participant surveys are designed to be completed at set time points throughout the course of a patient’s medical care, such as developmental milestones or treatment phases.
Our surveys will be sent via text message with a secure link to access the survey. All responses are anonymous, meaning no personally identifiable information is captured unless you voluntarily offer this information. We will also send survey reminders via text message. You can decide whether to complete each survey or not.
VicHip use REDCap (Research Electronic Data Capture), a secure, web-based software to build and manage our online database and surveys. It is widely used in the research community. You can read the REDCap privacy policy here.
Read more about communication and privacy in the VicHip Participant Information and Consent Form – Parent (English)
More information
The Australian Privacy Act is available on the Federal Register of Legislation
The Australian Privacy Principles is available on the Office of the Australian Information Commissioner's website
Proudly in partnership with
VicHip is funded by the Australian Government Department of Health and Aged Care under the Medical Research Future Fund grant 2015989.
Murdoch Children's Research Institute acknowledges the Traditional Custodians of lands on which we work and pay our respect to their Elders, past, present and emerging.