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

Terms of reference


  • 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 the means by which 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 AIHW and provide relevant feedback.
  • The Committee will report through the Chair:
    • to the overarching National Maternity Data Development Project Advisory Group for policy and strategic matters.
    • to the Group Head, Data Strategies and Discovery Group, AIHW (or delegate) for functional matters.


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.

Organisation Name of representative
Chair of NCAAG and AIHW Perinatal Advisor Prof Jeremy Oats
AIHW Perinatal Advisor Prof Michael Humphrey
AIHW Dr Fleur De Crespigny
AIHW Ms Bernice Cropper
Commonwealth Department of Health and Aged Care Ms Daniela Gagliardi
Department of Health ACT Ms Rosalind Sexton
Department of Health ACT Dr Farah Sethna
Department of Health NT Ms Leanne O’Neil
Department of Health Queensland Dr Trisha Johnston
Department of Health Tasmania Mr Peter Mansfield
NSW Ministry of Health Mr Tim Harrold
Safer Care Victoria Prof Mark Umstad
Safer Care Victoria Ms Joanna Gaston
Safer Care Victoria Dr Shirin Anil
SA Birth Defects Register Dr Catherine Gibson
SA Birth Defects Register Ms Heather Scott
WA Register of Developmental Anomalies Dr Gareth Baynam
Murdoch Children’s Research Institute  Ms Lisa Hui
Murdoch Children’s Research Institute Dr George McGillivray
Royal Brisbane and Women’s Hospital Assoc Prof Tim Donovan
Women's and Children's Hospital Prof Yee Khong
Rare Voices Australia Ms Nicole Millis
Syndromes without a name Ms Heather Renton


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

Contact details for the Secretariat are:

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