Patients, health professionals and researchers working together to cure arthritis and autoimmune diseases

Arthritis and autoimmune diseases are:

Painful

Causing inflammation (pain and swelling) of:

  • joints
  • muscles
  • bones
  • eyes
  • skin
  • other tissues

Disabling

Related to:

  • daily pain, stiffness and fatigue
  • tissue damage and scarring
  • joint destruction and deformity
  • impaired organ function (e.g. heart, lungs, kidneys)
  • higher rates of depression and anxiety
  • reduced life expectancy

Costly

To individual patients and society as a whole:

  • Arthritis/ musculoskeletal is the highest health area cost to our health system
  • High healthcare costs (e.g. biologic medications, joint replacements)
  • Higher rates of other expensive chronic health conditions
  • Impaired ability to work and earn a living
0 million
Australian children and adults live with arthritis, autoimmune or other musculoskeletal diseases
0+
types of arthritis and autoimmune disease with no known cures
0+ billion
annual health system costs for arthritis alone
0 billion
economic impact of autoimmune diseases in Australia each year

What is the A3BC project?

The Australian Arthritis and Autoimmune Biobank Collaborative (A3BC) is a national musculoskeletal and autoimmune disease biobanking network developing state-of-the-art data collection, data linkage, big data analytics and machine-learning capabilities for enabling and translating research discovery. It integrates a broad range of ‘omic’ (genomic, microbiomic etc), patient-reported (demographics, treatment, quality of life, diet etc), medical and administrative health data from people with arthritis and autoimmune disorders across Australia. Collected data and biological samples are deidentified, processed, stored and made available for ethics-approved, open-access research into understanding causes and improving treatment and prevention towards finding cures for arthritis and autoimmune conditions.

Key Studies and Collaborators

The A3BC represents a collaboration of several research groups and studies under a shared vision of better outcomes for patients with arthritis and autoimmune diseases.

Centre of Research Excellence for Better Outcomes in Inflammatory Arthritis

An overarching virtual network of national collaborators overseeing key A3BC research themes and taking a new holistic and multidisciplinary approach to data collection, analysis and development of the next generation of rheumatology researchers.

Read More (Coming Soon)

Australian Rheumatology Assocation Database (ARAD)

A long-running national Australian database which collects important health information from individuals with inflammatory arthritis.

Read More

PROSPECT clinical trial

A randomised controlled trial to compare drug dose reduction strategies in adults with rheumatoid arthritis and psoriatic arthritis for safer and more efficient drug use.

Read More

Australian and New Zealand Childhood Arthritis Risk factor Identification Study (ANZ CLARITY)

A national juvenile idiopathic arthritis (JIA) biobanking study working to better understand the form of childhood arthritis called JIA in hopes of improving care, identifying cause, and eventually, finding a cure.

Read More

A3BC for Kids

An Australia-wide project, centred around the CHAMPION (Child Hood Arthritis Multi-omic Predictions Improving Outcomes Nationally) Taper Trial that aims to advance precision medicine for children with juvenile idiopathic arthritis (JIA).

Read More

Australian Juvenile Arthritis Registry (AJAR)

A consumer-led paediatric registry aiming to improve understanding of juvenile arthritis in Australia, led by A3BC partners, the Australian Paediatric Rheumatology Group (APRG) and Juvenile Arthritis Foundation Australia (JAFA). Collected information will be used to raise awareness, inform care needs, lobbying, research priorities and clinical decision making.

Read More

Being an A3BC participant involves:

Donating biological samples

e.g. blood, saliva, discarded tissue from surgeries, faeces, urine

Enabling powerful 'omics' research

  • Genomics
  • Metabolomics
  • Microbiomics
  • Proteomics
  • Transcriptomics

Sample collections usually scheduled during routine clinic visits or appointments can be made with A3BC collection staff at a time that works for you.

Completing online questionnaires

on your computer, tablet or phone

Collecting Information on Your

  • Demographics
  • Medical history & treatments
  • Quality of life
  • Lifestyle
  • Diet
  • Environments and exposures

Emailed to you every 6 – 12 months to understand how your health, treatments, lifestyle and quality of life changes over time.

Consenting to health data linkage

from clinics, hospitals, state and national datasets

Opt-in to data linkage to

  • National – Medicare Benefits Schedule
  • National – Pharmaceutical Benefits Scheme
  • National or state – cancer, death, immunisation records
  • State – admissions (emergency, inpatients), notifiable conditions etc.
  • Hospital/health district – electronic medical records
  • Patient-controlled – MyHealthRecord

‘Data-linkage’ means we bring together your health information from different sources with your permission. This linked information helps researchers gain a more complete understanding of health and health journeys over time.

How you can get involved

Ask your doctor to:

1) Confirm you meet the study criteria, and

2) Complete a Permission to Contact (PTC) Form.

Dynamic informed consent

• A3BC study information will be handed or emailed to you so you can understand exactly what is involved in being a participant.

• To enrol in the study you are required to read, understand, fill in and sign a Participant Information Sheet & Consent Form (PISCF) either:

  • online at home (using an electronic consent form – eConsent) or;
  • in-person in the clinic with A3BC study staff (eConsent or paper form)

• The A3BC Consent Form is highly flexible for you. You may participate in a one-off or ongoing manner across some or all of the following collections:

  1. Self-reported questionnaires
  2. Blood/ Tissue/ Fluid provision
  3. Health data linkage permission

Blood collection scheduled

• Usually collected at the same time as your routine blood collection for your clinic visit.

• Four separate blood collections are required at:

  • Study enrolment (baseline)
  • 6 months after enrolment
  • 12 months after enrolment
  • 24 months after enrolment

• You may also be able to donate other biospecimens e.g. saliva, urine, faeces or waste tissue from any upcoming surgeries and biopsies you are scheduled for – all are very valuable to researchers. More information about these collections will be added soon.

Participant questionnaires

• The first (baseline) questionnaire will be emailed to you as soon as a signed consent form has been received. It asks questions about your disease, medications, lifestyle, quality of life, diet and environment/exposure history.

• After the first, shorter follow-up questionnaires are emailed to you 6 -monthly up to 2 years, then every 12 months for the life of the study which mainly ask about changes since your last questionnaire.

Future contact from the A3BC

• The A3BC may contact you to schedule upcoming biospecimen collections and remind you of your regular emailed questionnaires.

• We may contact you occasionally with newsletters about our latest research and to let you know of new studies which you may qualify to take part in. It is entirely up to you if you would like to take part in other studies.

• A3BC participants are free to withdraw from the study at any time. If you withdraw you will be asked if you wish for your already collected biospecimens and data to continue to be used for medical research or otherwise destroyed/erased.

The A3BC seeks to:

  • Establish a national, best-practice, open-access (ethics-approved) biobank network to collect, process and store a broad range of high-quality biospecimens for multi-omic research;

  • Integrate multi-omic data with multiple national datasets, including patient-reported outcome/ experience data (Australian Rheumatology Association Database – ARAD), electronic medical records (~40 hospitals), Commonwealth data (i.e. MBS, PBS) and cancer/death registries;

  • Apply cutting-edge visualisation (dashboards), big-data analytics and machine-learning tools to interrogate these integrated datasets for potential associations/patterns of patient and population significance; and

  • Enable the translation of research discoveries into a comprehensive evidence base for improved musculoskeletal policy/practice across precision and preventive medicine – to give the right care, to the right patient, at the right time!

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