Registry

Committee Members

• Paul Benitez-Aguirre (NSW)
• Andrew Biggin (NSW)  (CHAIR)
• Louise Conwell (QLD)
• Ian Hughes (QLD)
• Craig Jefferies (NZ)
• Kiranjit Joshi (WA)
• Peter Simm (VIC)
• Shubha Srinivasan (NSW)
• Elaine Tham (SA)

About the Committee

ANZSPED has funded the creation of a registry encompassing all paediatric endocrine diagnoses, with participation sought from patients and public hospitals across Australia and New Zealand.

The ANZSPED Registry Subcommittee was formed in 2020 with the purpose of developing an endocrine database to support the work of ANZSPED members.  A competitive process was open to all members to submit their proposal to use ANZSPED funding to develop a database/registry that would best benefit ANZSPED members.  The Children’s Hospital at Westmead proposal, led by Andrew Biggin was the successful bid.

The subcommittee has been formed to ensure there is representation across ANZSPED membership and this subcommittee will aim to help develop the plan to encompass other conditions and to focus on the longevity of the project.

About the Registry

The registry will provide pooled de-identified data to ANZSPED members and other approved applicants for national/international monitoring of diagnoses, research, and related projects intended for the benefit of future patients.

The APR is expected to commence data collection in early 2022.

APR Governance and steering

The ANZSPED Registry subcommittee is overseeing the development and ongoing operations of the registry, and will review data access requests and project proposals from ANZSPED members and other researchers.

APR Data Dictionary

A list of data items which may be entered into the registry can be found HERE . If you’d like to know more about which of these items are entered into your/your child’s record, please ask your local contact listed on the Participant Information Sheet for your site.

Participating hospitals and site-specific documentation

This is a list of sites which are currently authorised to provide data to the registry, and links to participant documents including each site’s Participant information sheet/s, consent form and Withdrawal form. Forms should be returned to the department of your hospital’s registry contact in person, via email or post.

 

	Site	Site Contact	Participant Information Sheets	Consent Form	Withdrawal Form
NSW	The Children’s Hospital (Randwick)	Prof. Geoffrey Ambler	Child Parent/guardian or young person	Consent form	Withdrawal form
NSW	Sydney Children’s Hospital (Randwick)	Dr Kris Neville	Child Parent/guardian or young person	Consent form	Withdrawal form
NSW	Royal North Shore Hospital	Dr Kim Ramjan	Child Parent/guardian or young person	Consent form	Withdrawal form
NSW	Gosford Hospital	Dr Richard McGee	Child Parent/guardian or young person	Consent form	Withdrawal form
NSW	Campbelltown Hospital	Dr Lisa Amato	Child Parent/guardian or young person	Consent form	Withdrawal form
NSW	John Hunter Children’s Hospital	A/Prof. Patricia Crock	Child Parent/guardian or young person	Consent form	Withdrawal form
VIC	Royal Children’s Hospital, Melbourne	Dr Peter Simm	Child Parent/guardian or young person	Consent form	Withdrawal form
QLD	Queensland Children’s Hospital	A/Prof Tony Huynh	Child Parent/guardian or young person	Consent form	Withdrawal form

APR Newsletter

• JUNE 2023:  Please CLICK HERE for Newsletter – including how to onboard new team members