Frequently asked questions

FOR PARENTS

About VicHip

The Victorian hip dysplasia registry, or VicHip, is a clinical registry of patients diagnosed with hip dysplasia in Victoria.

Welcome to our community! We are a passionate group of families, researchers and hip health experts dedicated to improving the care and treatment of hip dysplasia. Our mission is to help children get the best possible outcomes in their health journey with hip dysplasia.

Hip dysplasia, also known as developmental dysplasia of the hip (DDH), affects one in every hundred babies. It can lead to disability, pain or the need for hip replacement. It's important to catch and treat early, but it can be hard to detect. It's a global health problem, and we're working to fix it.

Do you have a child with hip dysplasia? We invite you to join VicHip and share valuable health information and insights with us. Our goal is to learn more about hip dysplasia, its causes, and find better ways to diagnose and manage the condition.

Together we can unlock the knowledge needed to create a future of healthier hips.

Learn more for parents or health professionals

 

A clinical registry collects and analyses confidential health information about patients with the same disease or condition, such as hip dysplasia. The data is obtained from the patient’s medical records and through participant surveys or interviews. Researchers then use this information to better understand the condition or disease and find the most effective treatments. By gathering data on a large number of patients, clinical registries can provide valuable insights that can improve the quality of care and treatment outcomes for future patients.

It's important to note that clinical registries aim to advance medical knowledge and improve patient care rather than provide individual medical treatment. Taking part in VicHip will not directly benefit you or your child. However, your involvement and sharing of information could lead to groundbreaking discoveries that shape treatment for future generations.

VicHip is not a clinical trial.

No. VicHip is not a clinical trial. It is a clinical registry*.

*A clinical registry collects and analyses confidential health information about patients with the same disease or condition, such as hip dysplasia. The data is obtained from the patient’s medical records and through participant surveys or interviews. Researchers then use this information to better understand the condition or disease and find the most effective treatments. By gathering data on a large number of patients, clinical registries can provide valuable insights that can improve the quality of care and treatment outcomes for future patients.

It's important to note that clinical registries aim to advance medical knowledge and improve patient care rather than provide individual medical treatment. Taking part in VicHip will not directly benefit you or your child. However, your involvement and sharing of information could lead to groundbreaking discoveries that shape treatment for future generations.

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. 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:

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

Learn more about our research focus areas

VicHip:

We partner with:

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


Joining VicHip

Your participation in VicHip will help us build a powerful clinical registry that can enhance diagnosis, treatment and care for people with hip dysplasia in Victoria and around the world.  

Here's how your participation can make a real impact:

  • be part of a supportive community
  • improve care for everyone 
  • shape focused research 
  • bridge knowledge gaps.

Read more about why join VicHip? or Click here to watch a parent video ► 

If you or your child has been diagnosed with hip dysplasia in Victoria, and your doctor or clinician works at a participating hospital or practice, we invite you to consider joining our registry and sharing information about your child's health and care with us.

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

  • If your child has been diagnosed with hip dysplasia in Victoria, and your doctor or clinician works at a participating hospital or practice, a VicHip team member may contact you. We usually do this 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.
  • If you decide to take part, 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.
  • Once you consent to take part, our work will happen mainly in the background. We collect and analyse de-identified* information about your child’s hips from their medical records.
  • 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.

* 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.

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

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.

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

No. Participation in VicHip is entirely voluntary. This means you only join our registry if you want to. You can leave anytime. Your doctor will continue to care for you as usual.

If your child has been diagnosed with hip dysplasia in Victoria, and your doctor or clinician works at a participating hospital or practice, a VicHip team member may contact you. We usually do this 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.

If you decide to take part, 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.

Read the complete VicHip Participant Information and Consent Form – Parent (English)

Icon: contact us

 If you have any questions or feedback, or would like to speak to someone about joining VicHip, please contact us

Yes. You can change your mind at any time. Simply email us at vichip@mcri.edu.au

Joining VicHip should not cause harm or affect your child’s treatment plan. You should continue attending your scheduled appointments as your doctor or clinician recommends. 

Like all data systems, there is a small risk of data privacy being breached. VicHip is firmly committed to ensuring that personal information remains private and secure. 

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)

No. Your child’s treatment plan will not change. You should continue attending your scheduled appointments as your doctor or clinician recommends.

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.

If you decide to take part in VicHip, it is important to read and understand the PICF. A member of the VicHip team 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.

Participation in VicHip is entirely voluntary. This means you only join our registry if you want to. You can leave anytime. Your doctor will continue to care for you as usual.

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.

Participation in VicHip is entirely voluntary. This means you only join our registry if you want to. You can leave anytime. Your doctor will continue to care for you as usual.


Data and Privacy

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. 

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

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.

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 could help other researchers improve clinical practice and public health worldwide. We work together to share knowledge and build high-quality evidence about hip dysplasia. 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 shares data with the Global Hip Dysplasia Registry (GHDR). 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, 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.


Icon: contact us

 If you have any questions or feedback, or would like to speak to someone about joining VicHip, 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.