Consent and Participation
A3BC participation has been designed to be flexible, transparent and participant‑led. On the consent form, participants may choose to take part in all, some, or none of the available components of the project.
For example, participants may choose to:
- Complete online questionnaires but not donate biospecimens
- Donate samples but not enable health data linkage
- Participate on a one‑off basis or ongoing over time
Participants can change their level of participation later and may withdraw at any time.
What can I consent to?
Depending on preferences, participants may opt in to:
- Online questionnaires and brief surveys
- Donation of biological samples (e.g. blood, stool, tissue)
- Longitudinal follow‑up or one‑off participation
- Linkage to health records and administrative datasets (e.g. Medicare, PBS), where applicable
- Being contacted about related studies or sub‑studies
Each option is explained clearly in the Participant Information Sheet before consent is given.
Which consent form will I use?
The A3BC uses age‑appropriate consent forms, based on the participant’s age and circumstances. The same consent framework is used for participants with and without arthritis or autoimmune disease.
Adults (18 years and over)
Adult Participant Information Sheet & Consent Form
- Used for all adult participants aged 18 years or older
- Covers overall medical research participation, including (where chosen) health data linkage
- Participants who joined A3BC as children are required to re‑consent as adults when they turn 18
Children and adolescents
Because consent requirements change as children grow, A3BC uses separate but linked consent forms for children, adolescents and parents/guardians.
Children under 14 years
Child (Under 14 Years) PARENT/GUARDIAN Participant Information Sheet & Consent Form
- Overall medical research consent is provided by a parent or legal guardian
- Includes permission for questionnaires, biospecimen collection and health data linkage
Children aged 14 to under 18 years
Consent involves two linked forms:
1. Child (14–18 years) PARENT/GUARDIAN Participant Information Sheet & Consent Form
- Parent/guardian provides consent for overall research participation
- Covers questionnaires, biospecimens and ongoing study participation
2. Child (14–18 years) CHILD Participant Information Sheet & Consent Form
- The young person provides consent specifically to allow release of their Services Australia (Medicare‑related) information, from age 14
When a participant turns 18, they are invited to complete the Adult consent form to continue participation.
Your choice, your control
Taking part in A3BC is entirely voluntary. Deciding not to participate, or choosing to take part in only some components, will not affect clinical care in any way.
Participants may update their preferences or withdraw from the project at any time.
Consent processes are approved by Human Research Ethics Committees and comply with national ethical and privacy requirements. Consent arrangements may be updated over time as participants age or as regulations change.
Samples
Depending on individual consent choices, participants may contribute all, some, or none of the following samples.
For participants who consent to ongoing collection, samples are typically collected at baseline (0 months) and then at 6, 12 and 24 months, where feasible. For participants who choose one‑off participation, samples are ideally collected at baseline only.
Blood samples
- Collected during routine clinic visits where possible
- Up to 80 mL in adults and weight‑based volumes in children, in line with national guidelines
- Additional (ad‑hoc) collections may occur when clinically meaningful events arise, such as disease flares, treatment changes or surgery
Other samples
- In some circumstances, samples such as saliva, stool, tissue or fluid may be collected during a scheduled clinical procedure or approved research activity
- Participation in these collections is optional and fully consented
Archived samples
- With appropriate consent and ethics approval, access to Newborn Screening Cards held by State genetic services and archived pathology samples (e.g. historical biopsies) may be sought on a project‑specific basis
Data
Depending on consent choices, participants may contribute data at baseline (0 months), 6, 12, 18 and 24 months, and then annually thereafter for the life of the project.
For participants choosing one‑off participation, questionnaires are ideally completed within six months of consent.
Data collected may include:
Brief surveys
- Short surveys (approximately 10 minutes) used in some cohorts to capture essential demographic or disease information
- Collected at selected timepoints, depending on age, diagnosis and study component
Patient‑reported outcome (PRO) questionnaires
- Online questionnaires covering symptoms, treatments, disease activity, quality of life, lifestyle and environmental factors
- Completion time varies, typically up to 60 minutes for baseline questionnaires and significantly less for follow‑up
- Timing may vary if disease flares or treatment changes occur
Linked health and research data
- Electronic medical records from hospitals, clinics and pathology services
- State and Commonwealth health data, including through Services Australia, the Australian Institute of Health and Welfare, and My Health Record
Data from approved longitudinal or lifecourse studies participants are involved in (e.g. Australian Rheumatology Association Database (ARAD), ANZ‑CLARITY, AJAR, 45 & Up Study)
All data are stored securely within A3BC systems hosted by the University of Sydney, with strict access and governance controls.
Future contact
Participants may be re‑contacted by the A3BC in the following situations:
- To clarify information already provided
- To invite participation in additional research activities, sub‑studies or clinical trials (which may require separate consent and will not affect existing participation)
- To notify participants — via an appropriate clinician — of any serious and significant incidental findings with potential health implications
Participants may choose whether or not they wish to be re‑contacted.
Linking to relatives
For approved research purposes, and only with consent, the A3BC may analytically link a participant’s data with data from their first‑ or second‑degree relatives who also participate in A3BC.
- No personal data are ever shared between relatives
- Data are linked within the secure A3BC system only
- Linking occurs only when both individuals have provided consent
This approach supports research into shared genetic, environmental and immune factors while protecting privacy.
Electronic consent (eConsent)
Where possible, A3BC uses a secure electronic consent (eConsent) system. This allows participants and families to:
- Review information at their own pace
- Ask questions before deciding
- Complete consent remotely or in clinic
Paper consent options remain available if preferred.
Your choice, your control
Taking part in A3BC is entirely voluntary. Deciding not to participate, or choosing to take part in only some components, will not affect clinical care in any way.
Participants may update their preferences or withdraw from the project at any time.
Consent processes are approved by Human Research Ethics Committees and comply with national ethical and privacy requirements. Consent arrangements may be updated over time as participants age or as regulations change.