Step two:  Read through the information below then click on "Go to Consent form" at the bottom of the page.

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Communication is integral to living.  Communication is also important for children’s social and academic development. There are many reasons why children may have a communication delay/difficulties. Some communication difficulties are present at birth. Other communication difficulties can develop over time. Communication changes can also happen suddenly.

Research is essential to learn more about communication difficulties in children. Research can help to find:

• causes of communication delay/difficulty,
• effects of a communication delay/difficulty,
• the best options for assessment and therapy. 

It is important that research is done with children and families who are directly and indirectly affected by communication difficulties. As such, we invite: children/adolescents with a communication delay/difficulty; family members and friends of people with a communication delay/difficulty; and members of the public who are interested in communication research to join the Communication Research Registry.

The purpose of the Communication Research Registry is to assist researchers to do more communication research. The main aims of the Registry are to:

1. Develop a list of people who are willing to be told about communication research that is happening throughout Australia;
2. Conduct research with information stored in the Communication Research Registry (i.e. longitudinal research). Research that is done over a period of time, is very important. It will allow the Communication Research Registry investigators to look at changes over time. This type of communication research is needed.  This research project will also let us know what type of research is important to you, over time.

WHAT DOES JOINING THE RESEARCH REGISTRY INVOLVE?

If you register your child with the Communication Research Registry you are giving your permission a) for your child to be involved in longitudinal research and b) to be provided with information about research projects that you may wish your child to be a part of.

You will be asked to provide us with demographic information about your child such as their date of birth. Where applicable, you will also be asked to provide us with information about your child's communication delay/difficulty. 

The Communication Research Registry will use the information you provide to determine if your child is eligible to participate in other research projects. All research projects that recruit through the Communication Research Registry have ethical clearance from a human research ethics committee approved by the Australian Government National Health and Medical Research Council (NHMRC). If your child is eligible to participate in a research project, we will send you:

• Information about the project
• Invitations for your child to participate in different research projects. These research projects may be local to where you live or happening in other parts of Australia. 

You will be asked to contact the researchers if you wish for your child to participate in their research. It does not matter how many studies your child participates in. It is always your choice.

If you choose for your child to join a research project, the Communication Research Registry may keep a record of the communication assessments results the researchers do. This may include audio-visual assessment recordings, only if you agree to this.  

We will keep a record of the studies your child does. We want to know which research topics are important to you and your child. This information will be stored in the Communication Research Registry.

Each year, you will also be sent a Communication Research Registry questionnaire. The questionnaire will, for example, ask for your feedback about communication issues that concern you at that time. This will let us know the research topics that are important to you and your child. It will be your choice to complete this questionnaire. Your responses will be stored in the Communication Research Registry.

As a member of the Registry, your child may be invited to receive free communication assessments. This may help you and your child to monitor communication skills.  Results would be stored in the Communication Research Registry.

HOW WE WILL MANAGE YOUR PERSONAL INFORMATION?

Personal information will be managed in accordance with The University of Queensland's Privacy Management Policy.

Information about your child stored in the Communication Research Registry will not be released to any other researchers (i.e. other than those named as investigators on the Communication Research Registry project as per above) without your consent. If you would like any information to be given to other researchers (for example assessment results) you will need to:

• consent for your child to join their ethically approved study, and
• provide written consent for the Communication Research Registry to release specific information about your child to the researchers. 

Audio visual recordings of your child completing communication tasks will only be stored in the Communication Research Registry with your consent. This is your choice.

Any findings, reports, or publications that come from the Communication Research Registry will not identify you or your child.

WHY SHOULD MY CHILD JOIN THE COMMUNICATION RESEARCH REGISTRY?

Joining the Communication Research Registry may not directly benefit you or your child. However, as a member of the Registry you and your child may have the opportunity to:

1. learn more about communication difficulties
2. meet other children and families living with a communication difficulty
3. meet people who work with people with a communication difficulty
4. help others with a communication difficulty
5. be involved in research that may help improve services for children/adolescents and families living with a communication delay/difficulty.  

There are no risks to your child’s health in participating in this study. 

ARE THERE ANY COSTS TO JOINING THE COMMUNICATION RESEARCH REGISTRY?

There is no cost to join the Communication Research Registry.

WHAT IF I DO NOT WANT MY CHILD TO PARTICIPATE?

Participation in the Communication Research Registry is entirely voluntary. You are under no obligation to register your child with the Communication Research Registry. You are free to withdraw your child from the registry at any time, without giving a reason and without consequence. You can also request to remove your child’s data from the registry. This will not affect your or your child’s relationship with The University of Queensland.

PROJECT FEEDBACK

You will receive a free annual research newsletter. This will have information about the Communication Research Registry  projects and updates from researchers who have used the Communication Research Registry.

FURTHER INFORMATION AND CONTACT DETAILS

If you would like to speak to an officer not involved in the study, you may contact the Ethics Officer on 07 3365 3924.

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