Invitation to join The Voices Research Participant Registry
 

Swinburne University of Technology

Project Title: Voices Research Participant Registry

Primary Investigators:

Assoc. Prof. Neil Thomas, Centre for Mental Health, Swinburne University of Technology

Prof. Susan Rossell, Centre for Mental Health, Swinburne University of Technology
 

You are invited to have your details registered on The Voices Research Participant Registry. Please read this information carefully. Before deciding whether or not to register your details, you might want to talk about it with a relative, friend or healthcare worker.
 

Research tells us that each year at least 4% of the population hear voices, sounds or auditory sensations that other people cannot.

Swinburne University of Technology conducts a range of research projects on hearing voices. These often require the participation of:
- people who hear voices
- relatives of people who hear voices
- people who have received a psychiatric diagnosis but don’t hear voices
- other people willing to participate as control participants.
 

To aid researchers in undertaking important research in this field, a centralised participant registry has been developed containing the contact details of people who are willing to be contacted about research projects on hearing voices. The registry contains names and contact details, together with some basic information that will help us identify who is suitable for projects such as whether you have heard voices or received a mental illness diagnosis, whether you have ever suffered a head injury, handedness, family history of psychiatric illness and whether English is your first language.
 

If you do decide to join, authorised researchers may contact you when recruiting for studies relating to hearing voices to inform you about the research and ask you whether you would be interested in participating.  Should you be contacted about a particular project, you would be provided with full project details to make an informed decision about whether to take part.  You will not be obliged to participate in any project if you do not wish to. There are no direct risks of harm from being registered on the database. You should be aware that with any database there is a risk of unauthorised access to data. We have appropriate security measures in place to safeguard the database in line with privacy and data protection law. The likely benefits of this registry are a coordinated response to participant recruitment that will reduce the burden on future participants.
 

Any research projects you are contacted about will first have been approved by an independent ethics committee. Only authorised researchers at Swinburne University of Technology and their collaborators will have access to details contained in the registry. All researchers wishing to access the database will need to apply for, and be granted permission prior to being able to access the registry. If you are contacted about a potential research study, you will always be given the option to remain on the participant registry or withdraw. You can be removed from the registry at any time upon your request.

 

If you want any further information concerning the registry you can contact the principal researcher, Associate Professor Neil Thomas, on (03) 9214 8742 or Professor Susan Rossell on (03) 9214 8173. Please keep this information for your reference.

 

This project has been approved by or on behalf of Swinburne’s Human Research Ethics Committee (SUHREC) in line with the National Statement on Ethical Conduct in Human Research. If you have any concerns or complaints about the conduct of this project, you can contact:
Research Ethics Officer, Swinburne Research (H68),
Swinburne University of Technology, P O Box 218, HAWTHORN VIC 3122 Australia.
Tel (03) 9214 3845 or +61 3 9214 3845 or resethics@swin.edu.au

 

 

 

I have read the above information and I understand the general purposes and methods of the Voices Research Participant Registry. I understand that I can request the withdrawal of my personal and health information from this registry at any time.
 

I give permission for the following details to be recorded on the Voices Research Participant Registry. I understand that these details are confidential and will be used only to contact me with regard to future participation in research studies related to hearing voices.