The A3BC has commenced small-scale participant recruitment for pilot testing of study procedures at a small number of sites. Testing should be complete and full operations starting in late 2019. Please continue to check our website for updates on the official starting dates for recruitment at each clinical site.
Step 1 – Ensure you are able to participate in the A3BC project by checking that you meet the inclusion criteria below:
- Any gender (male, female or non-binary)
- Aged from 0 – 18 years for Juvenile Idiopathic Arthritis and other childhood musculoskeletal and autoimmune diseases.
- Aged over 18 years for Rheumatoid Arthritis, Psoriatic Arthritis and Ankylosing Spondylitis, Vasculitis and other adult musculoskeletal and autoimmune diseases.
- Willing to allow your General Practitioner and/or Consultant physician to be notified of your participation.
- You have been formally diagnosed under validated classification systems related to your diagnosed disease.
- You are able (in your rheumatologist’s opinion) and willing to comply with all study requirements.
- You (or your parent/guardian) are willing and able to give informed consent for participation.
Step 2 – Discuss the A3BC with your treating rheumatologist to check whether you may be excluded for the following reasons:
- You don’t have a valid email address. The A3BC will send participant information, consent forms, questionnaires and newsletters via email; therefore, you must be able to receive emails and complete questionnaires online to take part in the A3BC.
- You are unable to speak English at a level capable of understanding the informed consent process, or you don’t have access to an interpreter to enable this level of understanding.
- You have a significant disease or disorder which, in the opinion of the your rheumatologist, may either put you at risk because of participation in the study, or may influence the result of the study, or your ability to participate in the study. For example, cognitive impairment that would interfere with completing a self-administered questionnaire.
- Legacy/existing samples/data collected through participating sites will not be included in the A3BC network’s collections given non-compliance in existing consent and the collection through to storage under historical SOP parameters and related technologies.
Step 3 – Discuss consenting to take part in the A3BC with your rheumatologist
Taking part in the A3BC project means that you are asked to:
- Complete online surveys every 6 – 12 months.
- Permit access to your medical/health data.
- Donate samples of your blood, tissue and/or fluid (biospecimens) over a 2-year period.
You can choose if you would like to take part in all three of these options or only one or two. For example it is possible to enrol and only complete questionnaires without donating any biospecimens (samples).
If you consent to all three options, you will have blood and possibly tissue/fluid collected and information regarding your condition, including your medical history, medications, function and quality of life. You will also be permitting the A3BC to link to other health data related to your condition. There are no particular lifestyle, dietary factors or medications that will restrict you from being a part of the A3BC project. You should take your regular medication, as directed by your treating rheumatologist. You can still donate blood, but given you are already giving blood to the A3BC, you should do so under guidance from a doctor or nurse.
See the ‘How do I Participate‘ page for more information on the consent process.