Frequently Asked Questions
The Join Us National register is an ongoing project where data collection is currently ongoing. We collect personal details, health and demographic information. This information is de-identified and stored in secure databases at UNSW Sydney and The George Institute.
As a participant, you will only receive invitation emails about research studies that you are matched with based on the eligibility criteria of the study and the information you had provided at the point of registration.
About the Join Us Research Register
Join Us is an online research register that helps Australians take part in life-saving health and medical research. We 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.
We simply ask for your contact information, some brief health information, and invite you to research opportunities that may be suitable to you.
Join Us was started in 2020 by The George Institute and the University of New South Wales.
We have partnered with more than 50 leading research, healthcare, and consumer organisations from across the country, including The Heart Foundation, CSIRO, Healthdirect Australia, and Men’s Shed. You can find our full list of Partner Organisations here.
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 and do not need to give a reason for your withdrawal.
If you withdraw from the register, you can choose for Join Us to either:
- Destroy all information collected about you. This will mean the personal identifiers and de-identified health data can no longer be used for research and you will not be contacted about future studies; or
- Retain the de-identified health data collected about you to date but delete your contact details from the database. No further information will be collected about you, and you will not be contacted about future studies.
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.
You can withdraw from the register by:
Your identifying personal details, such as name and date of birth 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 your identifying personal details.
Your health and demographic information will be separated from your personal information and stored in a separate database located at the University of New South Wales, called the E-Research Institutional Cloud Architecture (ERICA) Platform. ERICA is a secure cloud computing environment that has been approved by eHealth New South Wales for data security.
By separating your personal identifying information from your health data, storing these details in separate secure databases not accessible by the same staff members, and using unique reference codes instead of personal details, the risk of identifiable health data being leaked is low.
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.
Your personal details, such as name and date of birth 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 segments. The system will assign a unique reference number to your personal details.
Your health and demographic information will be transferred to the University of New South Wales E-Research Institutional Cloud Architecture (ERICA) Platform. ERICA is a secure cloud computing environment that has been approved by eHealth New South Wales for data security. Your health and demographic information will be de-identified by tagging it only with your unique reference number and not with your personal details.
Storing your personal details separate from your health and demographic information is done to maximise the security of your data. The database linking your personal details to your unique reference number and your health and demographic information is only accessible to ‘Join Us’ team members with special security clearance. This arrangement ensures that no one knows which health and demographic information belongs to which person.
You will not be identifiable in published study reports and no results for individual participants will be disclosed. Additionally, your information will not be used for an unspecified purpose outside of ethically approved studies. All of your data are physically located within Australian borders.
The participant demographic information Join Us will collect and store includes:
- Date of birth
- Country of birth
- Current state and postcode
- Gender identity
- Sex recorded at birth
- Aboriginal and/or Torres Strait Islander status
- Languages spoken at home
Your identifying demographic information, as listed above, 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 details will not be used to match to a 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. At any point you can request to have your data removed from the register. If you choose to have your data destroyed, the Join Us register administrator will delete your record in the register. All health and demographic records in ERICA will be disposed of in accordance with the University of New South Wales’ Data Governance Policy.
The information you will provide is identifying personal information regulated by Australian privacy laws. You have the right of access to identifying personal information held about you by Join Us, the right to request correction and amendment, and the right to make a complaint about a breach of applicable privacy laws. Information on how The George Institute manages identifying personal information can be found here. Further information about how the University of New South Wales manages identifying personal information can be found in their Data Governance Policy and their Research Data Governance & Materials Handling Policy.
A breach of data security is a potential risk, and privacy of information held within the Join Us register is taken very seriously. Join Us uses several strategies to maximise data security:
- The Join Us register is managed by The George Institute and the University of New South Wales who are both world-leading research facilities with comprehensive procedures in place to manage sensitive health data.
- The Join Us register will store your health and demographic information in the E-Research Institutional Cloud Architecture (ERICA) Platform. ERICA has completed the full eHealth New South Wales Privacy Security Assurance Framework review and eHealth New South Wales has formally advised that ERICA is designed with adequate security to meet the requirements of New South Wales Health. The ERICA platform has comprehensive security protocols for storage, access, quality assurance, retention and destruction of data. All Join Us team members and researchers with approval to analyse data through ERICA will receive specific and comprehensive training.
- The Join Us participant identifying personal details are stored separate from the health and demographic information. In addition, the health and demographic information held by Join Us is de-identified and comprehensive privacy-preserve protocols are in place for procedures linking identifying personal details to the health and demographic information in ERICA.
We have put in place measures to protect the security of your information, and to prevent your personal information from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed. In addition, we limit access (by physical and technical safeguards) to your personal information to those staff, related parties, and approved third-parties (e.g. agents, service providers, collaborators and research partners) who have a business or legal need to know.
We have also put in place procedures to deal with any suspected data breach and will notify you and any applicable regulator of a suspected breach where we are legally required to do so.
Your participation helps make a contribution to the health of the larger Australian community. You may also have the opportunity to take part in clinical trials investigating new treatments or let your friends and relatives know about the possibility of taking part in medical research.
Getting involved in health and medical research studies will help our researchers find answers to medical challenges facing us all – preventing disease, and finding cures and treatments that can benefit ourselves, our families, neighbours and the greater Australian community.
Additionally, some studies may offer payment for costs such as travel. Gift vouchers or other benefits may also be offered when taking part in a study.
Any research studies you are invited to participate in via Join Us may have their own risks but these will be clearly explained to you so you can make an informed decision about taking part.
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.
When the Join Us team matches you to an approved research study and you agree to participate, you will be informed by the researchers responsible for that study about all details of the research you participate in. This will include finding out the results at the completion of the study.
The Join Us Research Register has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney Local Health District. Any person with concerns or complaints about the conduct of this study should contact the Executive Officer on 02 9515 6766 and quote protocol number X21-0467.
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 to arrange appropriate medical treatment. If you are eligible for Medicare, you can receive required medical treatment free of charge, as a public patient in any Australian public hospital.
You can contact the Join Us team by phone or email:
Telephone: (02) 8052 4798
Email: [email protected]
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.