Join Us is an online research register that helps Australians take part in life changing health and medical research. The register helps match people who are willing to participate in health and medical research with studies relevant to them. The register is simple and free to join and use, with users able to withdraw at any time.

Join Us was started in 2020 by The George Institute and the University of New South Wales. The register is managed by The George Institute for Global Health, with the assistance of the University of New South Wales. Join Us has collaborated with more than 40 leading research, healthcare, and consumer organisations (www.joinus.org.au/collaborators) from across Australia.

Participation in the Join Us register is voluntary. You should feel under no obligation to participate. Choosing not to take part will not affect your current or future medical care in any way.

Yes, you can withdraw from the register at any time, without having to give a reason for your withdrawal, by completing the electronic withdrawal form on the Join Us website.

You can also withdraw from the Register by accessing the Join Us Participant Portal and following the steps to update your consent or withdraw from the Register entirely.

If you withdraw, you will be able to choose to remove all your data or retain your deidentified health related data only. It may not be possible to withdraw information already used for research or publication; you will need to contact the research study team directly regarding withdrawing from their study.

The information you provide at the time of registration is used to match you to research projects. You might be matched to research projects based on information such as your age, sex and whether you do or do not have certain medical conditions. When you receive a research project invitation, you will be provided with information about the research, what is involved and any further eligibility criteria.

You can then decide whether the research project is a good match for you and whether you would like to take part.

The privacy of your data is an absolute priority. After registering, your personal contact details are manually separated from your health-related details. Your personal details are held in a database managed by The George Institute for Global Health and your health-related details are transferred to and stored in a separate database managed by the University of New South Wales. Both databases are secure and encrypted, meet industry and Government data security standards and are located in Australia.

To maximise data security, once separated, no staff member has access to the separated datasets. Both The George Institute for Global Health and the University of New South Wales havealso put in place procedures to deal with any suspected data breach; you and any applicable regulator will be notified of a suspected breach where we are legally required to do so. Join Us participant data is not shared with researchers or any 3rd party. Join Us uses data collected to match participants to research projects and then sends eligible participants an email invitation to join that research project. After that it’s up to the potential participant to get in touch with the research project team and there is no obligation to do so if it’s not right for you at that time.

You will not be identifiable in published study reports and no results for individual participants will be disclosed that you have not previously consented to. Additionally, your information will not be used for an unspecified purpose outside of ethically approved studies. All the databases which store your data are physically located within Australian borders.

To join the register, you will need to provide your contact information and some information about your health and demographics that will help match you to appropriate research projects. If you do not provide this information, you will not be able to join and participate in the Join Us initiative.

The participant information Join Us will collect and store includes:

• Name
• Date of birth
• Email
• Country of birth
• Postcode and state / territory
• Phone number (optional)
• Gender identity
• Sex recorded at birth
• Aboriginal and/or Torres Strait Islander status
• Languages spoken at home
• Health information
• How did you hear about us

Your identifying information (Name, Email, State and Postcode) will be separated from the health-related information for added security. The data will be held in an industry standard, password protected, encrypted database designed to meet the privacy and security requirements of commercial, government and not-for-profit organisations. The database system will assign a unique reference number to these details. The unique reference number, not your identifying information, will be used to match you to a research study.

The Join Us Register is intended to be a long-term project and has no end date, with data intended to be stored indefinitely or until you request to be removed from the Register (or someone requests for your removal on your behalf). We will retain your personal information for as long as reasonably necessary to fulfil the purposes we collected it for, and to satisfy any legal, regulatory, or reporting requirements. For more information, please read the Privacy Policy.

You can update your contact and health conditions in the Participant Portal. You can also use the portal to change the number of invitations you want to receive per year.

The Join Us Privacy Policy contains information about how you can access the personal information TGI holds about you, how you can request correction of any inaccurate information, how you can make a complaint about the handling of your personal information and how we will deal with such complaint. You can find a copy of the Join Us Privacy Policy here. 

Data are held in secure and encrypted databases that meet industry and Government data security standards and which are located in Australia. Appropriate access controls, security measures and procedures are also employed to maximise data security.

Taking part in Join Us and participating in health research projects helps contribute to the health of the Australian community and generate new health findings in areas such as cancer treatment and chronic disease. Where relevant, you may also be able to participate in clinical trials investigating new treatments and you can even let your friends and relatives know about the research projects and trials.

Some research projects may offer payment for costs such as travel. Gift vouchers or other benefits are sometimes offered when joining a research project. Whether you do participate in any suggested research project or not will have no bearing on your Join Us registration and we will continue to match you to appropriate research projects and send you invitations to join them.

Any research studies you are invited to participate in via Join Us may have their own risks and benefits and these will be clearly outlined in the research study participant information sheet so that you can make an informed decision about taking part in the research study you are invited to.

Join Us is the only not-for-profit disease-agnostic national research register of its type in Australia. There are other disease registries for people with specific health problems and some commercial registers that connect people with studies being done by pharmaceutical companies. You are welcome to participate in Join Us even if you are already involved in health and medical research in another way or signed up to another register.

The Participant Information statement can be found here . The information in these statements is very similar and all versions adhere to the same data safety and security protocols. A copy of the Participant Information Statement, which you consented to, was also emailed to your nominated email address at the point of registration.

It doesn’t cost anything to sign up to Join Us and there is no cost associated with being a participant in the register.

If you suffer any injuries or complications as a result of a research study that the Join Us register has matched you to, you should contact the study team leading that research study as soon as possible.

If you have a complaint regarding any aspect of the Join Us Register or the way your data is being handled, please contact the Sydney Local Health District Human Research Office:

Complaints Contact
Position: Research Executive Officer
T: 02 9515 6766 E: SLHD-RPAEthics@health.nsw.gov.au
Join Us register approval number: 2021/ETH12277

You can contact the Join Us team by phone or email:

Telephone: (02) 8052 4798

Email: info@joinus.org.au

If you need to contact researchers who are conducting a research study you have agreed to participate in, you can find their contact details in the Participant Information Statement you received from that study.