VOLUNTEER RESEARCH REGISTER

PARTICIPANT INFORMATION STATEMENT, PRIVACY POLICY AND TERMS OF USE

PARTICIPANT INFORMATION STATEMENT

Purpose of Volunteer Research Register
You are invited to submit your details to the Black Dog Institute Volunteer Research Register.  The purpose of the register is to notify you about research studies in which you might be interested in taking part.      

Description of Register and risks
The Black Dog Institute conducts a large program of many different kinds of research studies in mood disorders.  We are always looking for people – both with and without mood disorders – to take part in the research studies.  At the same time, we receive many offers from people who want to take part in research in order to help advance scientific knowledge about mood disorders.  In order to help this happen, we are developing a register of people who have said they would like to be involved in our research studies. 

The Volunteer Research Register is designed to securely store your name, contact details and some basic information about you, such as the year in which you were born, whether you have ever been diagnosed with a mental health problem, and whether you have participated in any Black Dog Institute research studies previously.  In that way, we can contact you if a new research study is started in which you might be interested.  Also, it allows us to avoid asking you for the same information each time you take part in a research study.

If you decide to join the Black Dog Institute Volunteer Research Register, the Register Administrator will periodically send you information about a research study for which you might be suitable - for you to decide if you would like to be involved.  The decision is entirely yours.  If you are interested in being involved, we will ask you to give us your consent to give your name and contact details to the Researcher leading the specific research study. Your details will not be given to other Researchers, unless you specifically give your consent.

We will securely store your details in the Volunteer Research Register within a password-protected database.  Only the Black Dog Institute Volunteer Research Register Administrator will have access to the database.
 
Possible benefits of joining the Volunteer Research Register include hearing about Black Dog Institute research studies when they first come on stream (that is, you won’t need to continually check the endeavour for new research studies), and avoiding the need to supply the same information about yourself for each research study in which you take part.  However, we cannot and do not guarantee or promise that you will receive any benefits from a study.

Health Questions
To join the Volunteer Research Register, you will need to complete an online form, located below the Participant Information Statement and Terms of Use box.  The completion of this form will take approximately 3 minutes. You will be asked questions about your personal details, your mental health history, and optional questions about previous study participation at the Black Dog Institute and UNSW.  The Volunteer Research Register Administrator will then phone you to confirm your details.   There are no anticipated risks to the process - unless you supply us with contact details that are not suitable (e.g. not private) for us to contact you.

We ask that you provide accurate responses to these questions, so that you can receive study invitations that are appropriate for your specific circumstances. Please refer to the Privacy Policy section of this document for further information.

Confidentiality and disclosure of information
Any information that is obtained in connection with the Black Dog Institute Volunteer Research Register and that can be identified with you will remain confidential and will be disclosed only with your permission, except as required by law. 

If you give us your permission by joining the Volunteer Research Register, we plan to publish papers about the use of volunteer research registers in academic journals or conferences for the purpose of scientific advancement.  In any publication, information will be provided in such a way that you cannot be identified. Please refer to the Privacy Policy section of this document for further information.

Complaints may be directed to the Ethics Secretariat, The University of New South Wales, SYDNEY 2052 AUSTRALIA (phone 9385 4234, fax 9385 6648, email ethics.sec@unsw.edu.au). Any complaint you make will be investigated promptly and you will be informed out the outcome.

Feedback
At any time, you may contact the Black Dog Institute Volunteer Research Register Administrator for information about new studies coming on stream.  Feedback from the individual studies in which you take part will be provided to you by the Researchers concerned. 

Your consent
Taking part in the Research Participant Registry is voluntary. Your decision whether or not to participate in the Volunteer Research Register is separate from any clinical care you may be involved in and it will not prejudice your future relations with the University of New South Wales and the Black Dog Institute.

If you no longer wish to be registered with the Volunteer Research Register you can do so by logging in and withdrawing your consent at any time without prejudice. This will send a request to the Volunteer Research Register Administrator to disable your account, your information will be withdrawn from the Volunteer Research Register database and you will no longer be contacted by the Volunteer Research Register about future research studies. Please allow 7 days for your account deactivation to be processed.

Please read the Privacy Policy and Terms of Use.  If you have any questions, please feel free to ask us.  You can contact Black Dog Institute Volunteer Research Register Administrator on vrradmin@blackdog.org.au or if you have further questions, you can contact A/Professor Judy Proudfoot on j.proudfoot@unsw.edu.au.

PRIVACY POLICY

Privacy Notice
The Black Dog Institute recognises that your privacy is very important to you and that we are under a legal obligation to protect the integrity of your personal information. In accordance with the amendments of the Privacy Act 1988 which came into effect on 21 December 2001, we comply with the National Privacy Principles set out in the Act. This statement sets out the Black Dog Institute’s policy relating to the collection and use of your personal information in the Volunteer Research Register.

Please note that this Privacy Notice applies only to the Volunteer Research Register site and not to any other sites that are linked to the Volunteer Research Register site or mentioned on the site.

Storage and security of your personal information
Our information systems and files are kept secured from unauthorised access in a password protected database located on secure servers within an offsite controlled facility.  Access to information stored electronically is restricted to staff whose job purpose requires access. We follow generally accepted industry standards to protect your personal information and use secure socket layer technology. Although we will endeavour to protect your personal information, we are unable to guarantee that any information you transmit to us over the internet is 100% secure. Any information you transmit to us is conducted at your own risk.

Your role in protecting personal information
By keeping your personal information secure and being aware of security, you can play an important part in protecting your personal information.  You are responsible for maintaining the security and confidentiality of your username and password. Always logoff from the Volunteer Research Register after completing your session, and do not let other people use your Volunteer Research Register account.

What if I want to check what personal information you hold about me?
Subject to any legal restrictions, we are happy to advise you what personal information we hold about you, should you request this. If your request is particularly complex or requires detailed searching of our records, there may be a cost to you in order for us to provide this information. If you believe there are errors in our records about you, please let us know and we will be happy to investigate and correct any inaccuracies.

Our use of cookies
Volunteer Research Register website uses cookies to improve the quality of our service. Cookies are pieces of information that are transferred to your computer’s hard disk when you open the Volunteer Research Register web pages. Cookies by themselves do not collect any personal information but they do identify your browser.

The Volunteer Research Register uses a ‘session’ cookie.  It is destroyed when you logout or close your browser or exit the Volunteer Research Register in any other way. You must allow this cookie in your browser in order to retain your login throughout your visit.

The Volunteer Research Register also uses a cookie to record your username in the login page.   You do not have to allow this cookie, but it only holds your username and no personal details. This cookie is not deleted at the end of your session, but you can delete it manually if you wish.
When you use the Volunteer Research Register, our servers automatically record information that your browser sends whenever you visit a website. These server logs may include information such as your web request, Internet Protocol (IP) address, browser type, browser language, the date and time of your request and one or more cookies that may uniquely identify your browser. We use this information to evaluate our website performance and continually improve our services for you.

Most web browsers are set up to accept cookies, and while you can set your browser to not accept cookies, however, the Volunteer Research Register may not function properly if you do this.

TERMS OF USE

Ability to Accept Terms of Use
You affirm that you are over the age of 18, as the Volunteer Research Register is not intended for people under 18. If you are under 18 years of age, then please do not use the Volunteer Research Register.

Changes to our Information Statement and Terms of Use
We will review the Volunteer Research Register Information Statement and Terms of Use from time to time to take account of new laws and technology, changes to our operations and practices and to make sure it remains appropriate to the changing environment. The amended terms will be made available on this website. Not all changes to the Information Statement and Terms of Use will require your consent. We will notify you of any change to the Information Statement and Terms of Use that requires your consent before being implemented. If you do not want to agree to changes to the Information Statement and Terms of Use, you can withdraw your consent at any time.

If you have any questions, please feel free to ask us.  You can contact Black Dog Institute Volunteer Research Register Administrator on vrradmin@blackdog.org.au.