Participant Information Sheet

1. What is the research study about?

The research study aims to determine the average cost burden of chronic gout to Australian households. You have been invited because you have gout.

 

2. Who is conducting this research?

The study is being carried out by the following researchers: Professor Richard Day, Dr Amy Nguyen, Dr Sophie Stocker and Mr Nicholas Nathan, School of Medicine, University of New South Wales, 02 8382 2199.

Research Funder: This research is being funded by a National Health and Medical Research Council (NHMRC) Partnership Grant.

 

3. Inclusion/Exclusion Criteria
Before you decide to participate in this research project, we need to ensure that it is ok for you to take part. The research study is looking recruit people who meet the following criteria:

  • Have a diagnosis of gout
  • 18 years old or over
  • Live in Australia

 

4. Do I have to take part in this research study?
Participation in any research project is voluntary. If you do not want to take part, you do not have to. If you decide you want to take part in the research study, you will be asked to:

  • Read the information carefully (ask questions if necessary);
  • Complete the online questionnaire.

 

5. What does participation in this research require, and are there any risks involved?
If you decide to take part in the research study, we will ask you to complete an online questionnaire. The questionnaire will ask you questions about out-of-pocket expenses that gout places on you and your immediate household, as well as your use of health services. It should take approximately 20-30 minutes to complete.

We don’t expect this questionnaire to cause any harm or discomfort, however if you experience feelings of distress as a result of participation in this study you can let the research team know and they will provide you with assistance.

 

6. What are the possible benefits to participation?
We hope to use information we get from this research study to benefit others who suffer from the financial burden of gout. This is the initial step towards developing effective interventions to reduce the financial burden associated with gout.

In addition, if you opt to leave an email address, you will be entered into a lottery to win a $200 gift voucher. This option is completely voluntary.

 

7. What will happen to information about me?
Submission of the online questionnaire is an indication of your consent. By clicking the ‘agree to participate’ button you are providing your permission for the research team collect and use information about you for the research study. Your data will be kept for 15 years. We will store information about you in a non-identifiable format at St Vincent’s Hospital, Sydney. Your information will only be used for publication in journals and presentations in scientific meetings by the investigators. Additionally, the partners in this NHMRC Partnership Grant may also release general information of findings on their associated websites and media releases.

 

8. How and when will I find out what the results of the research study are?
The research team intend to publish and/ report the results of the research study in a variety of ways. All information published will be done in a way that will not identify you.

If you would like to receive a copy of the results you can let the research team know by contacting the research personnel using the details provided below.

 

9. What if I want to withdraw from the research study?
If you do consent to participate, you may withdraw at any time. You can do this by closing the questionnaire. If you withdraw from the research we will destroy any information that has already been collected. Once you have submitted the questionnaire however, we will not be able to withdraw your responses as the questionnaire is anonymous.

 

10. What should I do if I have further questions about my involvement in the research study? 

 

Research Team Contact

The person you may need to contact will depend on the nature of your query. If you want any further information concerning this project or if you have any problems, which may be related to your involvement in the project, you can contact the following member/s of the research team:

Name Dr Amy Nguyen
Position Postdoctoral Research Fellow
Telephone 02 8382 2199
Email amy.nguyen@unsw.edu.au

 

11. What if I have a complaint or any concerns about the research study?

If you have any complaints about any aspect of the project, the way it is being conducted, then you may contact:

Complaints Contact

Position Human Research Ethics Coordinator
Telephone + 61 2 9385 6222
Email humanethics@unsw.edu.au
HC Reference Number HC16956