The GrowthShare Study aims to improve growth charts for children with bone dysplasias.

A growth chart is a chart that shows the normal range for height at a given age. Plotting your child’s height on a growth chart is an easy way to monitor your child’s health. If a child’s height falls outside of the normal range, this could be an early warning sign that there is a serious medical problem.

Children with bone dysplasias have a genetic defect that prevents their bones from growing normally. There are many different types of bone dysplasias, each with a unique pattern of growth. As these children grow differently from other children, they need to be plotted on growth charts specific to their condition. Since bone dysplasias are rare, it is difficult to collect measurements from enough children with these conditions to produce a high quality growth chart. Low quality growth charts (based on a small amount of measurements) do exist, but they are rarely used as they are not easily accessible and many doctors are not even aware of their existence. For many conditions, there are no available growth charts at all. The goal of this project is therefore twofold: 1) promote the use of the existing growth charts and 2) collect height measurements from patients using the app to produce better growth charts in the future.

To achieve this goal we have developed the GrowthShare app. If your child has a bone dysplasia, you can record his/her height, weight and head circumference with the GrowthShare app. If a growth chart for his/her condition is available, the measurements will be shown on the appropriate growth chart. You can choose to share the measurements you entered with the research team. This will allow us to improve the existing growth charts and to create new growth charts for conditions where no growth charts currently exist. The new and improved growth charts will be made available through the GrowthShare app. Hence, the more people use it, the better it gets!

The GrowthShare app is developed by the Bone Dysplasia Research Group at the University of Sydney.

The GrowthShare app can be downloaded here:

To participate in the GrowthShare Study, you will have to give informed consent. The first time you launch the GrowthShare app, you will be asked to read an information sheet and to sign a consent form. The information sheet will be displayed within the GrowthShare app and you will be able to sign the consent form with your finger on your phone. The information sheet and consent form are reproduced below and can also be downloaded here.

If you have any questions about the GrowthShare App or the GrowthShare Study, please contact us at [email protected]

Your child is invited to take part in a research study about building new disease-specific growth charts.

Your child has been invited to participate in this study because of his/her diagnosis with a bone dysplasia. This Participant Information Statement tells you about the research study. Knowing what is involved will help you decide if you want to let your child take part in the research. Please read this sheet carefully and ask questions about anything that you don’t understand or want to know more about.

Participation in this research study is voluntary.

By giving your consent you are telling us that you:

• Understand what you have read.
• Agree for your child to take part in the research study as outlined below.
• Agree to the use of your child’s personal information as described.

The study is being carried out by the following researchers:

• Andreas Zankl, Professor, University of Sydney
• Po Liu, Medical Student, University of Sydney

After downloading the application onto your device, you will be asked to enter growth data such as height, weight, and head circumference of your child into the application.

Each measurement takes about 1 minute to complete. You can enter as many or as few measurements as you like

Anyone with a diagnosed bone dysplasia can take part in the study.

Being in this study is completely voluntary and your child does not have to take part. Your decision whether to participate will not affect your/their relationship with the researchers or anyone else at the University of Sydney, now or in the future.

If you decide to take part in the study and then change your mind later you are free to withdraw from the study at any time. You can withdraw by selecting the toggle in the profile menu in the application. There are no consequences if you choose to withdraw.

Your in-application responses can be withdrawn any time before and after you have submitted the growth data. We will automatically delete any data from our secured facilities once you withdraw consent from the application.

There is a small risk that someone could get unauthorised access to the data we collect on your child. We take great care that the data you share with us will only be accessible to members of the research team, so we believe this risk is very small. There are no costs associated with taking part in this study.

Your child might benefit through access to new and improved growth charts for his/her condition. If you allow us to contact you in the future, your child might also benefit through access to other studies.

By providing your consent, you are agreeing to us collecting personal information about your child for the purposes of this research study. Their personal information will only be used for the purposes outlined in this Participant Information Statement, unless you consent otherwise.

Your child’s information will be stored securely and their identity/information will be kept strictly confidential, except as required by law. Study findings may be published, but your child will not be individually identifiable in these publications.

We will keep the information we collect for this study, and we may use it in future projects. By providing your consent you are allowing us to use your child’s information in future projects. We don’t know at this stage what these other projects will involve. We will seek ethical approval before using the information in these future projects.

Yes, you are welcome to tell other people about the study.

When you have read this information, Prof Andreas Zankl will be available to discuss it with you further and answer any questions you may have. If you or your child would like to know more at any stage during the study, please feel free to contact Prof Andreas Zankl at his email [email protected].

You have a right to receive feedback about the overall results of this study. You can tell us that you wish to receive feedback by selecting the toggle in the application in the profile menu. This feedback will be in the form of an email newsletter that keeps you informed about the progress of the project.

Research involving humans in Australia is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). The ethical aspects of this study have been approved by the HREC of the University of Sydney [INSERT protocol number once approval is obtained]. As part of this process, we have agreed to carry out the study according to the National Statement on Ethical Conduct in Human Research (2007). This statement has been developed to protect people who agree to take part in research studies.

If you (or your child) are concerned about the way this study is being conducted or wish to make a complaint to someone independent from the study, please contact the university using the details outlined below. Please quote the study title and protocol number.

The Manager, Ethics Administration, University of Sydney:

• Telephone: +61 2 8627 8176
• Email: [email protected]
• Fax: +61 2 8627 8177 (Facsimile)