Step two: Read through the information below then click on "Go to Consent form" at the bottom of the page.
|Title of Project:
Communication Research Registry
Professor Linda Worrall
Professor Louise Hickson, Professor Deborah Theodoros, A/Professor Joseph Kei, A/Professor David Copland,
Dr Carly Meyer, Dr Tanya Rose
School of Health and Rehabilitation Sciences
The University of Queensland
Communication is integral to living. A communication difficulty can affect a person’s ability to hear, talk, read, write, and understand. People with a communication difficulty can find it hard to do everyday things like talking to friends, reading the newspaper and watching television. There are many reasons why someone may have a communication difficulty. Some communication difficulties are present at birth. Other communication difficulties can develop over time. Communication changes can also happen suddenly. This may be the case after a stroke or brain injury.
Research is essential to learn more about communication difficulty. Research can help to find:
- causes of communication difficulty,
- effects of a communication difficulty,
- the best options for assessment and therapy.
It is important that research is done with people who are directly and indirectly affected by a communication difficulty. As such, we invite: people with a communication difficulty; family members and friends of people with a communication 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 project are to:
1. Develop a list of people who are willing to be contacted to participate in communication research that is happening throughout Australia;
2. Conduct research with information stored in the Communication Research Registry. Longitudinal research, i.e. 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.
WHAT DOES JOINING THE RESEARCH REGISTRY INVOLVE?
If you register with the Communication Research Registry you are indicating that you are interested in contributing to communication research.
You will be asked to provide us with demographic information about yourself such as your date of birth and address. Where applicable, you will also be asked to provide us with information about your communication difficulty.
The Communication Research Registry will use the information you provide to determine if you are 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 you are eligible to participate in the research projects, we will send you:
- Information about projects
- Invitations to join various research projects.These research projects may be local to where you live or happening in other parts of Australia.
It is always your choice to be involved. You will be asked to contact the researchers if you wish to participate in their research.
If you choose to join a research project, the Communication Research Registry will record communication assessment results (if completed) in the Communication Research Registry. This may include audio visual assessment recordings, if you agree to this.
We will keep a record of studies that you choose to participate in. We want to know which research topics are important to you. 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, confirm your contact details, ask for feedback, and ask you to let us know about communication issues that concern you. This will also let us know the research topics that are important to you. It will be your choice to complete this questionnaire. Your responses will be stored in the Communication Research Registry.
You may also be invited to receive free communication assessments. This may help you to monitor your communication skills. Your 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 you 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 to join their ethically approved study, and
- provide written consent for the Communication Research Registry to release specific information to the researchers.
You will be asked if you give consent for audio visual recordings of you to be stored in the Communication Research Registry. This is your choice.
Any findings, reports, or publications that come from the Communication Research Registry will not identify you.
WHY SHOULD I JOIN THE COMMUNICATION RESEARCH REGISTRY?
Joining the Communication Research Registry may not benefit you personally. However, as a member of the Registry you may have:
- the opportunity to learn more about communication difficulty
- the opportunity to meet others who have a similar communication difficulty
- the opportunity to meet people who work with people with a communication difficulty
- the opportunity to help others with a communication difficulty
- the opportunity to be involved in research projects that might help improve the positive health impacts of future research
Written information about research projects will also be provided in a way that considers communication difficulties. You will also be informed about research findings in an annual newsletter.
There are no risks to your health in participating in this study.
ARE THERE ANY COSTS TO JOINING THE COMMUNICATION RESEARCH REGISTRY?
There is no cost to joining the Communication Research Registry.
WHAT IF I DO NOT WANT TO PARTICIPATE OR PROVIDE MY INFORMATION?
Participation in the Communication Research Registry is entirely voluntary. You are under no obligation to join the registry, answer questions or participate in any research project in the future. You are free to withdraw from the Registry at any time without having to give a reason and without consequence. You can also remove your data from the registry. This will not affect your relationship with The University of Queensland.
You will receive a free annual research newsletter. This will have information about this research project and updates from researchers who have used the Communication Research Registry.
FURTHER INFORMATION AND CONTACT DETAILS:
This study has been cleared by one of the human research ethics committees of The University of Queensland in accordance with the National Health and Medical Research Council’s guidelines. You are of course, free to discuss your participation in this study with project staff (Linda Worrall on telephone 07 3365 2891 or Email: firstname.lastname@example.org).
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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