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What is VicHip?

The Victorian hip dysplasia registry, or VicHip, is a clinical registry of patients diagnosed with hip dysplasia in Victoria. Our research team works closely with families to improve hip care and outcomes for future patients.

Hip dysplasia, also known as developmental dysplasia of the hip (DDH), is a condition where the hip joint does not develop normally. Early diagnosis and treatment are crucial to prevent long-term problems. 

If you are being checked, treated or seeing a doctor for hip dysplasia at a participating hospital or practice in Victoria, we collect your health information. If you don't want us to collect your health information, that’s ok. You can opt-out or withdraw from VicHip anytime by contacting us. Your decision will not affect your medical care.

Learn more about VicHip for parents or health professionals

Why does VicHip collect information?

Our aim is to:

• gain deeper insights into the causes and risk factors of hip dysplasia
• find better ways to detect, treat and manage the condition
• enhance care and services that improve outcomes for future patients. 

What is a clinical registry? 

A clinical registry collects and analyses health information from patients with the same disease or condition, such as hip dysplasia. Data is collected from medical records, clinician notes, linked research databases and surveys. This information helps doctors and researchers better understand the condition and find the most effective treatments. By gathering information from many people, clinical registries can help improve the quality of healthcare and outcomes for future patients worldwide.

It's important to understand that clinical registries aim to enhance medical knowledge and care for future patients, rather than provide individual medical treatment. Being in a registry may not benefit you or your child, but it could lead to groundbreaking discoveries that improve care and treatment for others in the future. VicHip is not a clinical trial.

Who is conducting VicHip?

VicHip is led by the Murdoch Children’s Research Institute. We work with various organisations and hospitals across Victoria, including The Royal Children's Hospital, Melbourne. Learn more about our partners and supporters.

What information do we collect?

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.

We are currently collecting patient information from The Royal Children’s Hospital, Melbourne using the opt-out system. Other VicHip health partners will begin using the same opt-out system soon.   

Want to help improve care for others? 

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. 

Want to do more? Join our Consumer Advisory Group (open to the public) and share your experiences in a focus group, provide feedback on our research methods and materials, or take part in other VicHip research or child health studies. We want to ensure that our research reflects what is most important to patients and their families. 

Privacy protection 

Australian privacy laws protect your information. We remove 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 your privacy.  

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.

Learn more about your data and privacy including how we store and look after your information. 

Does VicHip share data with other organisations or researchers? 

Yes. VicHip data is shared with other researchers because it has immense potential to improve clinical practice and public health worldwide. We work together to share knowledge and build high-quality evidence about hip dysplasia. 

VicHip shares data with the Global Hip Dysplasia Registry (GHDR). 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.     

Learn more about our research partnerships, data access and sharing or data access governance and requests.

What are the risks? 

Taking part in VicHip should not affect you or your child’s medical care or treatment plan. Please follow your doctor or clinician's recommendations and attend your scheduled appointments. 

Like any data system, there is a small risk of a data privacy breach. Murdoch Children's Research Institute takes strong measures to keep your personal information private and secure. 

Learn more about your data and privacy 

What approval do you have to collect my information? 

We have received approval to collect your health information through the VicHip opt-out system. The Royal Children’s Hospital Human Research Ethics Committee granted this approval for patients at The Royal Children’s Hospital, Melbourne in January 2025. Other VicHip health partners will use the same opt-out system soon, once they obtain their own site-specific ethics approval.   

You can learn more about ethics and governance or read the biographies of our team – a group of highly regarded orthopaedic surgeons, clinicians and researchers who are committed to conducting research in a safe and ethical manner.

Do I have to be in the registry? 

No, you don't have to be part of VicHip. However, we use an opt-out system. This means if you don't want your information included, you must let us know. You can contact us by email, phone, text or complete our online opt-out form – details below.

Your choice

If you don't want us to collect your health information, that’s ok. You can opt-out or withdraw from VicHip anytime. Your decision will not affect your medical care.

Learn more

Check out our frequently asked questions (FAQs) for parents or health professionals

How to opt-out 

To opt-out, please contact us with: 

• your name, email and mobile number
• your child's date of birth.

Contact methods:

1. Phone: (03) 9936 6246
2. Text (SMS): 0439 310 318
3. Email: vichip@mcri.edu.au
4. Quickest way 👉 complete our online opt-out form