Common questions

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 and health professionals 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. 

Through research and collaboration, we aim to:

• learn more about its causes and risk factors
• find better ways to screen, diagnose and treat the condition
• unite families and health professionals in a powerful alliance to enhance care and services in Victoria. 

Learn more for parents 

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.

No. VicHip is not a clinical trial. It 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. 

Hip dysplasia, or DDH (developmental dysplasia of the hip), is a common condition in children where the hip ball-and-socket joint does not develop normally. Early diagnosis and treatment are crucial to prevent long-term problems. 

Read more about hip dysplasia

Early detection and management of hip dysplasia are crucial for ensuring better long-term outcomes for patients and their families. However, hip dysplasia can be difficult to detect through a physical examination because the signs and symptoms are not always obvious. Furthermore, referral pathways are often unclear, imaging results are interpreted and reported inconsistently, treatment methods vary widely, and the lack of long-term studies is slowing progress in research.  

To address these challenges, we need a hip dysplasia registry for long-term patient monitoring and data linking with other research studies to gain deeper insights into hip dysplasia. This will help us trial new approaches, bridge the gap in healthcare delivery, and establish a shared understanding of the screening and diagnostic evidence.

VicHip registry data is used to understand hip dysplasia better, measure the quality of care provided and how it relates to patient outcomes. Our research falls into three key focus areas:

• causes and risk factors
• early diagnosis and treatment
• shaping a future of healthier hips.

Learn more about our research focus areas

VicHip:

• is led by the Murdoch Children’s Research Institute (MCRI)
• supported by The Royal Children’s Hospital, Melbourne and The University of Melbourne
• and funded by the Australian Government Department of Health and Aged Care under the Medical Research Future Fund (MRFF) grant ID 2015989.

We partner with:

• Barwon Health
• Monash Health
• Western Health
• Generation Victoria (GenV)
• British Columbia Children's Hospital Research Institute, Canada
• Global Hip Dysplasia Registry (GHDR), Canada
• and the International Hip Dysplasia Institute (IHDI), USA. 
  
  

VicHip is overseen by a Study Steering Committee, which is made up of a stellar team of research investigators. They are a group of highly regarded orthopaedic surgeons, clinicians and researchers at the forefront of hip dysplasia research. Read more about the VicHip Study Steering Committee or meet our team

VicHip is funded by the Australian Government Department of Health and Aged Care under the Medical Research Future Fund (MRFF) grant ID 2015989. Read more about our partners and supporters

Your involvement in hip dysplasia research can make a real difference by providing:  

• better care: you can help us track long-term outcomes and the effectiveness of treatments 
• family-focused research: your insights can guide our research on what matters most to patients and families
• global knowledge: your contribution can help bridge gaps in our understanding of hip dysplasia.

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. 

Click here to watch a parent video ► 

If you are being checked, treated or seeing a doctor for hip dysplasia at a participating hospital or practice in Victoria, we invite you to take part in our registry or sub-study. Your contribution could help improve care and treatment for future patients. 

VicHip was designed to make it easy for families to get involved and take up little time.

If you are being checked, treated or seeing a doctor for hip dysplasia at a participating hospital or practice in Victoria, we invite you to take part in our registry or sub-study. 

• A VicHip team member may contact you in person or by phone after your child’s clinic appointment or hospital visit. We will explain VicHip, what is involved in taking part, and answer any questions you have. 
• It is important to read and understand the VicHip Participant Information and Consent Form – Parent (English). We will review this information with you and ask you to sign the consent section. You will get a copy to keep. Your consent covers you and your child.
• 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. 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.

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.

Learn more about communication and privacy or read the complete VicHip Participant Information and Consent Form – Parent (English)

Patient-Reported Outcome Measures (PROMs) are tools or surveys designed to collect information directly from the perspective of the patient or caregiver about their child’s health, care and well-being. These measures are used globally in clinical registries and medical research.

Learn more about PROMs

No, you don't have to take part in 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.

How to opt-out 

To opt-out, 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 

Yes. If you prefer we no longer collect your health information, that’s ok. You can opt-out from VicHip anytime. Your decision will not affect your medical care. Simply email us at vichip@mcri.edu.au

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 

No. 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. 

A Participant Information and Consent Form (PICF) is a document that outlines the purpose of a research study and explains what is involved in taking part.

It is important to read and understand the PICF. A member of the VicHip team will review this information with you. You will get a copy to keep. Your consent covers you and your child.

Learn more about our PICF or read the complete VicHip Participant Information and Consent Form – Parent (English)

eConsent is an electronic method of obtaining consent to participate in research using a digital program instead of a hardcopy paper consent form.

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.   

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.

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.

Learn more about data and privacy or read the complete VicHip Participant Information and Consent Form – Parent (English)

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.

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 data access and sharing

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 data access governance and requests, data access and sharing or research partnerships

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.