Frequently Asked Questions
Australian Juvenile Arthritis Registry (AJAR)
Taking part
The Australian Juvenile Arthritis Registry (AJAR) is a national project that aims to gather key information on Australian children and young adults with juvenile arthritis (JIA) and other rheumatic diseases of childhood, for the purpose of better describing the extent of these conditions and the magnitude of their health and societal impact. The Juvenile Arthritis Foundation Australian (JAFA) and the Australian Paediatric Rheumatology Group (APRG) have partnered with the Australian Arthritis and Autoimmune Biobank Collaborative (A3BC) to establish the Registry.
You are being invited to take part in the AJAR because you/your child have a musculoskeletal and/or autoimmune condition affecting your bones, joints, muscles, immune system or other parts of your body, which was diagnosed before the age of 16. Your participation will help researchers and consumer groups to raise awareness of these conditions, their care needs and lobby for better services and more support and research.
Your choice to participate will support research and lobbying for the public good. These efforts may result in discoveries that could change, improve or save you/your child’s life or the lives of others in the future.
Health information is regarded as one of the most sensitive types of personal information. For this reason, there are laws, policies and procedures in place to protect the safety and security of your health and personal information.
While the AJAR and A3BC take the greatest possible care to protect you, there is a very small risk of breach of privacy. If this were to happen, it would be dealt with in line with strict State and Commonwealth Government privacy laws and guidelines. Read more about this in the FAQ section on Protecting your Privacy.
Participation in the AJAR is very simple, only requiring completion of a brief AJAR Enrolment and Permission to Contact (PTC) Form. Typically, this form takes less than 10 minutes to complete and can be completed either in clinic with your/your child’s doctor, or on-line weblink (click here). Participants enrolling in the AJAR must be under 25 years old and have a juvenile rheumatic disease diagnosis.
Enrolling participants can also indicate if they would like to be contacted for brief annual surveys and/or other future studies, including participation in the A3BC Biobank-Registry for biospecimen collections, questionnaires and data-linkages. For more information about the A3BC see their separate FAQs page: https://a3bc.org.au/faqs/
Participation in the A3BC will typically require a little more of your time, because it can involve the collection of biospecimens (e.g. blood samples), clinical assessments and the completion of longer 6-12 monthly online questionnaires. It is important to note that A3BC participation options are very flexible, and you can always opt-out of certain parts of A3BC participation if you wish (Refer to ‘Are there different options for participation?’). While more effort is typically required for A3BC participants, the resulting power of the research is significantly enhanced, and we encourage all AJAR participants to participate if they can. For more information about the A3BC see their separate FAQs page: https://a3bc.org.au/faqs/
For participants who enrol themselves or their child using the AJAR Self Enrolment and Permission to Contact Form, a verification of the diagnosis may be sought from your/your child’s Specialist or GP. This process will help ensure the accuracy of information on the AJAR and would involve the following steps:
- a brief phone call to the Specialist or GP from the AJAR/A3BC team to confirm your details and diagnosis
- a notification email would be sent to you confirming when this contact had occurred
Importantly, this contact can only occur if you give permission on the AJAR Self-Enrolment and Permission to Contact Form.
For participants who are enrolling via their clinician using the AJAR Clinic Enrolment and Permission to Contact Form, no additional contact is required because you/your child’s diagnosis is verified by the clinician completing the form.
Health and Personal Information and Health Data
Health and personal information is information about you and your health. It includes information that could identify you.
Legal definitions can be found here:
https://www.ipc.nsw.gov.au/privacy/nsw-privacy-laws/hrip-act
https://www.ipc.nsw.gov.au/privacy/nsw-privacy-laws/ppip-act
Unless you choose to withdraw from the project, the AJAR and A3BC will, compliant with State requirements, store your data for a minimum of 15 years after the conclusion of the project, or after research subjects have reached or would have reached the age of 25 years, whichever is longer. Health and personal information is kept under strict security and privacy conditions in line with the law.
We will securely maintain your data (without need to contact you) so it can continue to contribute to future research. However, you can choose to stop participating (partially or completely) at any time. Please refer to the Withdrawal of Consent section.
In the instance you request your data to be removed from the system, in accordance with Australian regulations, AJAR and A3BC will ensure the complete destruction of all identifiable copies. This includes SQL delete command and purging of copies contained in system/network backups and cloud data. Where information is stored in the cloud, we ensure the service contract stipulates, under retention and disposal requirements, that all copies should be destroyed. The following records are kept to demonstrate disposal: date of the destruction, method of destruction, person authorising the destruction, description of the files, date range of the files, and quantity of files (gigabytes). Paper-based documents will be disposed of in secure waste bins or B Class shredders.
Access to data
Consumer groups, such as JAFA or Arthritis Australia, may be provided with information collected from your Registry Enrolment and Permission to Contact (PTC) Form and brief surveys. These data will always be provided without identifying personal information (your name and contact details will not be released), for example, as summarised (aggregated) data for release by newsletter or periodically posted on their websites and other social media.
Researchers can apply to use your data, however they must have their project reviewed and approved by a Human Research Ethics Committee. Only legitimate and approved health and medical researchers can apply for access to your data. Researchers are only provided information without identifying personal information (your name and contact details will not be released).
Before they can access data, researchers must apply to the AJAR-A3BC and provide detailed information about their research project and credentials.
Research projects must also be approved by an accredited Human Research Ethics Committee.
Researchers can hold your health data in accordance with the Human Research Ethics Committee (HREC) approval and Material Transfer Agreement for their project. This can vary between projects but can be a few years. The researchers are not allowed to use your data for any additional projects that have not been approved by HREC and AJAR-A3BC Access Committee.
After your data are collected, consumer groups and researchers can be provided with your health data. However, your name and address will have been removed and replaced with a random number (code). This will protect your privacy. Researchers will not be able to identify you or contact you personally.
Your personal information will only be accessible to authorised members of the AJAR and A3BC project team, all of whom will have received training in handling private information and who will be required to sign a confidentiality agreement.
In any publication discussing the project, information will be reported in such a way that you cannot be identified. There is almost no possibility of unsolicited re-identification of your data at any stage, including within publications. In an unlikely event where re-identification did occur, researchers would be required by law to maintain your privacy.
Protecting your privacy
Your electronic information will be stored in a highly secure, encrypted database managed by the University of Sydney under strict security protocols (restricted use local servers) which conform to Australian data standards.
If your information was recorded on a paper form it will be stored in a swipe-card secured room, inside a locked filing cabinet.
Your data will be handled securely according to the relevant ethics approvals, privacy laws and contracts.
Your identifying information is only visible to essential AJAR and A3BC staff, all of whom will have received training in handling private information and who are required to sign a confidentiality agreement. Authorised access is password-protected and restricted by the AJAR-A3BC Data Manager so that data-entry staff can only use parts (e.g. view, create, edit, delete, export, logging, lock/unlock) of the database relevant to their role. The database records an extensive field-level audit log of all users (incl. ID, date, time, change made) who access and modify the database. Login detail sharing is prohibited and the system has two-factor authentication capability.
External researchers and consumer groups wishing to access the AJAR are only provided information without identifying information (e.g. no name, address).
Should any breach of privacy occur, the AJAR and A3BC will ensure the situation is dealt with in accordance with jurisdictional privacy laws and guidelines. Any publication discussing the project will be reported in such a way that you cannot be identified.
Your information is protected under the national Privacy Act (1988) and state health record privacy acts. The AJAR and A3BC, as well as researchers accessing the AJAR and A3BC resource, must adhere to these laws.
Should any breach of privacy occur, the AJAR and A3BC will ensure the situation is dealt with in accordance with jurisdictional privacy laws and guidelines. Any publication discussing the project will be reported in such a way that you cannot be identified.
Your information is protected under the national Privacy Act (1988) and state health record privacy acts. The AJAR and A3BC, as well as Australian and international researchers accessing the AJAR and A3BC resource, must adhere to these laws.
Enrolling children
Adult participants aged 18 years of age or older can enrol themselves in the AJAR.
Child participants under the age of 18 must be enrolled by their parent/guardian.
When a participant who was enrolled as a child turns 18 years of age they will be contacted by the AJAR and A3BC to confirm they wish to continue AJAR participation as an adult.
Research projects
Your data are securely stored and are only used for consumer group-driven awareness and lobbying efforts or ethically approved health and medical related research. This includes research on causes, risk factors, diagnosis and treatments.
You will not always know what research projects your data are being used for. This is because your data are safely stored in the AJAR and A3BC without your identifying details, such as your name, address or date of birth.
However, we will provide important discoveries (always de-identified group data) via our websites and/or newsletters. A list of research publications which required data from the AJAR will also be available on the JAFA (https://www.jafa.org.au) and A3BC websites (https://a3bc.org.au).
The AJAR-A3BC is working with consumer partners and plans to seek input for consumer priorities to guide our research priorities. But at this stage you cannot individually direct your data to specific research projects. By making a decision to donate your data, you are consenting for your de-identified data to be used for unspecified ethically approved health and medical research or consumer group awareness and lobbying efforts.
The AJAR-A3BC Access Committee discusses each proposed research project and only gives access based on strong scientific merit and potential benefits of the project to people with juvenile musculoskeletal and autoimmune conditions.
Payment
No. Your decision to participate in the AJAR for health and medical research is voluntary and for the public good. You will not receive any payment for your participation.
Withdrawal of consent or change of details
You can change your mind at any time about participating in the AJAR. You are not required to give a reason for your withdrawal, although any feedback would be appreciated and used to improve the AJAR.
For children under the age of 18, the parent/ guardian must complete the withdrawal form.
There are two major options for withdrawal. Option 1 is to stop actively participating but allow for your valuable data already collected to continue to be used in research. Option 2 is to stop actively participating and to not allow continued use of your data and request your data are destroyed. Your withdrawal is flexible, so you can withdraw from some or all participation. For example, you may only want to withdraw from further survey participation but still receive contact about future AJAR developments or research opportunities. Even if you completely withdraw, you can still access news and updates via our website. Your participation will remain current for the life of the project, even after your death, unless you explicitly choose to withdraw participation.
You can complete the withdrawal form by phoning or emailing the AJAR-A3BC team for assistance, or you can download it from our website, complete it and email it to the AJAR-A3BC team.
Phone 02 9463 1891, email info@a3bc.org.au or visit our website a3bc.org.au
Should you consent to be recontacted, the AJAR may contact you for the following (although we will keep contact to a minimum):
- To ask you for clarification, additional participation (e.g. brief annual surveys) or invite you to take part in other studies (may need separate consent, but not affect your AJAR participation).
- To confirm that participants enrolled as children (under 18 years of age) are happy to continue their participation as adults when they turn 18 years of age.
Because the AJAR can involve long-term follow-up, it is important that we have up-to-date contact details for all participants.
If you have consented to receive emailed brief surveys, you can easily update your personal and contact details within your survey.
You can also email us at info@a3bc.org.au or call 02 9463 1891 if you prefer. It is important that we have your current email on file as this is our main method of communication with participants.
More information
If you would like more information about the AJAR or your participation, please call 02 9463 1891, email A3BC at info@a3bc.org.au, visit the A3BC website at a3bc.org.au or contact the JAFA team (email info@jafa.org.au).
Queries, concerns and complaints
If you have any queries, concerns or complaints about the conduct of the AJAR and A3BC (HREC reference 2019/ETH10386), these should be directed to:
Northern Sydney Local Health District Human Research Ethics Committee – Phone: 02 9926 4590
FAQs last updated: 3rd August 2022 (AJAR FAQs v1.0)