1. Introduction 

We invite you to join our Osteoarthritis (OA) Research Participant Network. The Network aims to connect people with OA (or who are at risk of developing OA) to research projects that may be of interest to them. 

This Participant Information Sheet tells you about the Network. If you would like more information, please do not hesitate to contact our research team email: osteoarthritis.research@sydney.edu.au

If you decide you’d like to join the Network, please complete our participant survey. By completing the survey, we will assume that you consent to be part of the Network and that you consent for us to store and use your information as described in this Information Sheet. Joining the Network is voluntary - you can withdraw your information from the Network at any time. 

The OA Research Participant Network is led by Prof David Hunter and is being run by the Osteoarthritis Clinical Research Group at the University of Sydney. The Network is supported by funding from the National Health and Medical Research Council (NHMRC) and the University of Sydney. 

2. What is the purpose of the OA Research Participant Network? 

Finding participants to take part in clinical trials and other studies can be challenging. Sometimes we find it difficult to find enough people. At other times, we find that the research project is not suitable for everyone who asks to join, for example because of their age, geographic location, or the severity of their OA. 

We hope that the OA Research Participant Network will connect people who would like to take part in OA research with OA research projects that suit them. This will help us to successfully conduct our research and to advance our understanding of the best care and treatment for people with OA.

3. What do I need to do to take part in the Network? 

To join the Network, you will need to complete our participant survey which will take about 5-10 minutes. We may contact you by email or SMS up to once per year to ask you to update your details. If you opt in, we may also send you OA community email newsletters. 

If you have had a recent scan (X-ray or Magnetic Resonance Imaging (MRI) scan), we will ask for your consent to access the results of this scan. If you have a scan as part of the screening procedures to join one of our clinical trials, we will ask for your consent to add the results of these scans to the Network to help keep your details on the Network up to date. These items are both optional. If you do not consent to these items, you can still be part of the Network. 

If we start a new research study that we think may suit you, we will invite you to take part by email or SMS. We will send you a maximum of 4 invitations per year. When you receive a research invitation, you will be able to decide whether or not you’d like to consider joining. The decision will be up to you, and we will not share your information with the research study team.  

4. What will happen to information about me? 

By joining the Network, you consent for the OA Research Participant Network research team to collect and use the personal information you provide which will include your contact details, brief medical history and demographics. Your personal information will be stored in a system called REDCap (Research Electronic Data Capture). REDCap is a secure, web-based application designed to collect survey and other data for research studies. The system is managed and stored on a secure server at the University of Sydney. 

Your information will be stored in the Network databank for as long as the Network is active unless your ask to withdraw. If your information on the Network becomes very out of date (for example, if it has not been updated in over 5 years), we may contact you to check if you are still interested in being involved. If we don’t hear from you, we may remove your information from the Network. 

We will not share your information with anyone outside the OA Research Participant Network research team except as required by law or to allow inspection to verify the Network databank procedures by authorised representatives of the University of Sydney or members of the approving Human Research Ethics Committee. 

We may publish or present administrative information about the set-up and management of the Network. In any publication and/or presentation, the information presented will be summarised so that you cannot be identified.

5. How can I withdraw my information from the Network? 

If, after joining the Network, you would like to withdraw, you can do so at any time by emailing osteoarthritis.research@sydney.edu.au  or by clicking the link at the bottom of any of our invitation emails. 

6. Who should I contact if I have concerns about the conduct of the Network? 

This project has been approved by the Northern Sydney Local Health District HREC. Any person with concerns or complaints about the conduct of this project should contact the Research Office who is nominated to receive complaints from research participants. You should contact them at NSLHD-Research@health.nsw.gov.au and quote REGIS reference number 2024/ETH01273. 

7. Further information and who to contact

For more information, please contact the OA Research Participant Network team on osteoarthritis.research@sydney.edu.au.