How Do I Participate?

i. Assess Your Eligibility

Confirm that you meet the eligibility criteria, ideally in discussion with your treating rheumatologist.

ii. Permission to Contact

If you meet the eligibility criteria you will then need to provide your permission for the A3BC to contact you so a consent form can be completed. There are two ways to do this:

  1. CLINICIAN REFERRAL: Your rheumatologist can complete the A3BC Clinician Permission to Contact (PTC) form with you in the clinic; OR
  2. SELF-REFERRAL*: You can complete an electronic A3BC Self-referral Permission to Contact (PTC) form yourself by clicking the link here.

*When we receive a self-referral PTC form an A3BC staff member will first contact your listed rheumatologist to confirm your diagnosis with them. This is to ensure that all diagnoses are confirmed by an appropriately qualified medical practitioner prior to consenting a participant to A3BC participation.

Please note that there may be a delay between the A3BC receiving your Permission to Contact and arranging your Informed Consent depending on local study establishment time frames, funding and staffing. Refer to the Recruitment Status map for details of study sites near you.

iii. Informed Consent

Once i and ii above are completed you will be asked to provide your informed consent to enter the A3BC. This can occur either in-person or remotely depending on your and your rheumatologist’s preferences:

  1. IN-PERSON: The rheumatologist and their research team complete the A3BC Participant Information Sheet and Consent Form (PISCF) with you (or the parent/guardian) in clinic. You (or the parent/guardian) can complete the consent form on paper or electronically to enrol in the A3BC study.
  2. REMOTE: You (or the parent/guardian) receive an email link containing the electronic A3BC Participant Information Sheet and Consent Form (PISCF) and you complete it on your computer or mobile device to enrol in the A3BC study.

Once you consent to participate in the A3BC and depending on your preferences expressed on your consent form, you will be sent your first questionnaire and scheduled for your first blood collection.

There are 6 consent forms used in the A3BC study. It’s important you complete the correct one which depends on your age, control/disease status and level of participation:

  1. Adult Participant Information Sheet & Consent Form – completed by participants aged 18 and older who have a diagnosed musculoskeletal or autoimmune disease and are considering full participation.
  2. Adult Control Participant Information Sheet & Consent Form – completed by participants aged 18 and older who do not have a diagnosed musculoskeletal or autoimmune disease and are considering full participation as a control.
  3. Adult (Tissue-only) Participant Information Sheet & Consent Form – completed by participants aged 18 and older who have a diagnosed musculoskeletal or autoimmune disease and wish to donate a one-off tissue sample and/or allow for one-off medical record access.
  4. Child (less than 14 years) Participant Information Sheet & Consent Form – completed by parents/guardians of child participants aged less than 14 who have a diagnosed musculoskeletal or autoimmune disease and are considering full participation.
  5. Child (14 – 18 years PARENT.GUARDIAN) Participant Information Sheet & Consent Form – completed by parents/guardians of child participants aged between 14 and 18 who have a diagnosed musculoskeletal or autoimmune disease and who are considering full participation. Note that children aged between 14 and 18 must complete the Child (14 – 18 years – CHILD) Participant Information Sheet & Consent Form if they wish to consent to allow access to their Services Australia data for research.
  6. Child (14 – 18 years – CHILD) Participant Information Sheet & Consent Form – completed by child participants aged between 14 and 18 who are consenting to allow access to their Services Australia data for research.

iv. Adult vs Child with JIA Recruitment

Two defined recruitment/consent processes will occur for paediatric JIA versus adult A3BC and child non-JIA cases. As illustrated below, while adult and child non-JIA cases will be recruited and consented directly into longitudinal sample and data collection with the A3BC, child JIA cases will be sequentially offered consent to 2 levels of participation in order to avoid over-burdening patients and their families. The 2 paediatric case participation levels are as follows:

1. Enrol to ANZ CLARITY
2. Enrol to A3BC Longitudinal (complete steps ii, iii and above)

JIA participants will first be explained the purpose of both studies, and what their involvement would be, in similar detail. Following these explanations and allowance for questioning, the participant will first be asked if they consent to enter the once-off collection of the ANZ CLARITY study. If the participant agrees to enter the ANZ CLARITY, they will then immediately be asked if they would agree to extend their participation to longitudinal collection within the A3BC (and ARAD). If the participant agrees to enter the A3BC, they will follow the associated biospecimen and data protocol (described here, developed in consultation between the A3BC and ANZ CLARITY), and the baseline biospecimens and data will become a shared resource between the two groups. Of note, while the baseline biospecimens and data will become a shared resource, longitudinal biospecimens and data collection beyond baseline will be the responsibility and custodianship of the A3BC Consortium.

v. Biospecimen Collection

Refer to the following sections on the FAQ page:

vi. Online Questionnaires

Refer to the following sections on the FAQ page:

vii. Medical / Health Data Linkage

Refer to the following sections on the FAQ page: