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Information for Participants and FAQ

Parent Information Consent Form (PICF) for JIA case participants 

How to get in touch (feedback)
If you have any feedback on the ANZ CLARITY study, please email us at clarity.study@mcri.edu.au. We’d love to hear from you!

How to update your contact details
If you have recently moved, changed telephone number or email address, you can let the ANZ CLARITY team know by contacting us at clarity.study@mcri.edu.au.

How to withdraw
If you no longer wish to participate in the ANZ CLARITY study, you can contact us at clarity.study@mcri.edu.au.

Self-referrals
If you’re not yet contributing to the ANZ CLARITY study but have an interest in being part of this exciting research project, or would just like further information, you can email us at clarity.study@mcri.edu.au.

Saliva Collection Instructional Video

Useful Links

The Royal Children’s Hospital (Melbourne) rheumatology department has some very useful links, including general information about JIA and information about specific medicines.

Arthritis Australia is another helpful resource for families.

Frequently Asked Questions

Where will the research be published?

Our aim is to publish our research findings in leading international peer-reviewed scientific journals.

How will participants be kept informed of study results?

You can find the latest information and research findings on our website: www.mcri.edu.au/clarity.

How will my information be kept safe?

Your information and data will be kept in a secure, password protected database. This storage is in compliance with The National Health & Medical Research Council Guidelines, as well as The Royal Children’s Hospital Human Research Ethics Committee requirements. Only approved members of the research team have access to your information.

How long has the study been running for?

The JIA biobank was established in 2008 at MCRI. Excitingly, we are now extending our biobank to include children not only in Victoria, but from all across Australia.

How long does involvement take?

The questionnaire will take you approximately 20-30 minutes to complete. We recommend you have your child’s newborn health book with you when you are completing the questionnaire. Depending on your child’s age, it will also take approximately 20-30 minutes to collect the required amount of saliva for the saliva sample. It will also take about 30 minutes wait time to have your child’s blood sample collected.

Are there any followup requirements?

No. All you need to do to take part in this research is complete the questionnaire, saliva sample and/or blood sample. After this, you will not have to take part in any follow-up.

Will there be any contact in the future?

If you give us your consent to be contacted in the future, we may notify you about future research projects you might like to participate in where additional samples or data are required. 

Can I start the questionnaire and finish it later?

Absolutely! If you start the questionnaire and want to complete it later you can click “Save and return later”. The survey will give you a unique code to enter when you open up the survey link again, taking you to the exact question in the questionnaire where you left.

What if I don’t understand a question?

That is okay! You can email our team at anzclarity@mcri.edu.au. One of our team members will get back to you.  

What if I change my mind?

Your participation in the biobank is voluntary and completely your choice. You are able to withdraw at any time. You can contact a member of our team at anzclarity@mcri.edu.au should you wish to discuss withdrawing at any stage.