Photo Acknowledgement: Paul Crock

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

APEG 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 APEG Registry Subcommittee was formed in 2020 with the purpose of developing an endocrine database to support the work of APEG members.  A competitive process was open to all members to submit their proposal to use APEG funding to develop a database/registry that would best benefit APEG 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 APEG 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 APEG 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 APEG Registry subcommittee is overseeing the development and ongoing operations of the registry, and will review data access requests and project proposals from APEG members and other researchers.

Further information

As the project progresses, more information will become available on this website. Stay tuned for a list of participating hospitals, and materials for patients and their families.