Background

The National Congenital Anomaly Advisory Group (NCAAG) provides expert clinical advice on re-establishing a national congenital anomalies data collection. 

Terms of reference

The NCAAG:

  • Provide expert advice and guidance on current and emerging congenital anomaly issues of relevance to the project.
  • Provide expert advice regarding the national congenital anomaly data collection and the development of data set specifications (DSS) for the National Congenital Anomalies Data Collection (NCADC).
  • Provide expert advice to identify the relevant issues and appropriate methods for national congenital anomaly reporting.
  • Provide expert advice around establishment of a new national congenital anomalies collection, including guidance around ensuring a future data collection can provide data and evidence to inform policy, driving improvements in safety and quality in healthcare.
  • Facilitate communication with professional bodies and other stakeholders where applicable to assist the Secretariat in progressing consultation on relevant items.
  • Review draft reporting templates and draft reports and suggest revisions where appropriate.
  • Provide expert advice identifying national congenital anomaly issues that should be considered for reporting and how such data can be accessed.
  • Provide expert advice regarding possible ways by which feedback can be given to:
    • state and territory congenital anomaly collections, however named
    • state and territory health departments.
  • Receive and review ad-hoc out-of- session papers, updates and reports from Australian Institute of Health and Welfare (AIHW) and provide relevant feedback.
  • The Committee updates through the Chair or the NCAAG Secretariat:

Membership

The NCAAG comprises of a representative from each State or Territory, clinical experts, consumer representatives and the AIHW.

Other observers and temporary members may be invited on a transitory basis as their expertise is required.

The NCAAG is currently chaired by Professor Jeremy Oats, who is the Perinatal Advisor to the AIHW.

NCAAG representatives
OrganisationName of representative
Chair of NCAAG and AIHW Perinatal AdvisorProf Jeremy Oats
AIHW Perinatal AdvisorProf Michael Humphrey
AIHWDr Adrian Webster
AIHWMs Jacqueline Rek
Department of Health ACTMs Rosalind Sexton
Department of Health ACTDr Farah Sethna
Department of Health NTMs Leanne O’Neil
Department of Health QueenslandDr Trisha Johnston
Department of Health TasmaniaMr Jeramie Spong
NSW Ministry of HealthMr Tim Harrold
Safer Care VictoriaProf Mark Umstad
Safer Care VictoriaMs Joanna Gaston
SA Birth Defects RegisterDr Catherine Gibson
SA Birth Defects RegisterMs Heather Scott
WA Register of Developmental AnomaliesDr Gareth Baynam
Murdoch Children’s Research InstituteMs Lisa Hui
Murdoch Children’s Research InstituteDr George McGillivray
Royal Brisbane and Women’s HospitalAssoc Prof Tim Donovan
Women's and Children's HospitalProf Yee Khong
Rare Voices AustraliaMs Nicole Millis
Consumer
Ms Heather Renton

Secretariat

Secretariat support is provided by the AIHW Maternal and Perinatal Health Unit.

Contact details

Secretariat, National Congenital Anomaly Advisory Group
Phone: (02) 6249 5054
Email: [email protected]