Data and privacy
VicHip is a clinical registry led by the Murdoch Children’s Research Institute (MCRI). We are firmly committed to ensuring that your personal information remains private and secure.
Governance and compliance
The Australian Privacy Act and the Australian Privacy Principles govern all personal information collected and stored by VicHip.
What information do we collect?
The information we collect and store helps us build the best possible clinical registry. We collect health information from your medical records, clinician notes, hospital records and other research databases linked to VicHip. This includes ultrasounds, X-rays, medical history, examination findings, treatment details and related costs. We also collect information through optional surveys and data on patients with normal or immature hips to establish baselines, refine diagnostic criteria, and improve understanding of hip-related issues and the quality of care patients receive.
We start collecting this data after you tell us (at your appointment or over the phone) that you’ve received information about VicHip. However, we wait two weeks before using it, so you have time to opt-out if you wish. If you choose to opt-out, we will delete all of your data.
Privacy protection
We keep your information private by removing your name and any other personal details that could identify you before using or sharing your information. All registry participants are assigned a unique study identification number to protect their privacy. This means that information in the database is de-identified, making it difficult for anyone to re-identify individuals.
We only use your contact details (name, email and phone number) to track your appointments, send you optional surveys and updates, make sure your information is correct and records are not duplicated, or invite you to take part in more detailed research. It also helps us with data audits and linkage with other information, such as hospital records. We keep your identifiable information separate from your medical data and limit who can see it. Only your doctor, approved researchers and clinicians can access your data.
Security
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.
Additional information
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.
Does VicHip share data with other organisations or researchers?
Yes, VicHip shares data with the Global Hip Dysplasia Registry (GHDR) which is hosted by the British Columbia Children's Hospital Research Institute in Canada. The GHDR brings together a wide range of information about hip dysplasia from various countries, helping researchers learn more about hip problems and hip care worldwide.
We also share some of our data with Generation Victoria (GenV), another research study run by Murdoch Children's Research Institute. GenV is studying the health of Victorian children born between October 2021 and October 2023 and their parents. They aim to find faster and better ways to predict, prevent and treat various health issues. Participants in VicHip can choose to be contacted by GenV to learn more about their research and how to take part (this requires your consent). GenV will explain how it works and what data they share, so you have all the information you need before deciding to take part.
Researchers can submit a request to VicHip to use de-identified data for future research projects by contacting us at vichip@mcri.edu.au
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.
If you’re part of the registry, our research will follow your child’s medical journey with hip dysplasia until they are at least 16 years old. For surgical patients, we'd like to see how their health progresses into adulthood. You’ll receive short (5-15 minute) surveys every 1-4 years by email or text (0448 456 897). These optional surveys will ask about your daily activities, pain, treatment, care and overall well-being. Your answers help us and your doctor understand what’s working well and what could be better.
VicHip participant surveys or PROMs 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
Have questions, feedback or want to get involved?
Please contact us
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.