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 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.
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.
Organisation name |
Name of representative |
Chair of the NCAAG and NMDDPAG
|
Prof Jeremy Oats |
Chair of the NMPMCEG Perinatal advisor to the AIHW |
Prof Michael Humphrey |
AIHW |
Dr Fleur De Crespigny |
AIHW |
Ms Bernice Cropper |
Murdoch Children’s Research Institute |
Ms Lisa Hui |
Royal Brisbane & Women’s Hospital |
Assoc Prof Tim Donovan |
NSW Department of Health |
Mr Tim Harrold |
Qld Department of Health |
Dr Trisha Johnston |
SA Department of Health |
Dr Catherine Gibson |
SA Department of Health |
Ms Heather Scott |
Vic Department of Health |
Dr Shirin Anil |
Women's and Children's Hospital |
Prof Yee Khong |
Western Australian Register of Developmental Anomalies (WARDA)
|
Dr Gareth Baynam
|
Tas Dept of Health |
Mr Peter Mansfield |
ACT Health |
Dr Farah Sethna |
NT Dept of Health |
Ms Leanne O’Neil |
Murdoch Children’s Research Institute |
Dr George McGillivray |
Vic Dept of Health |
Ms Joanna Gaston |
ACT Health |
Ms Rosalind Sexton |
Commonwealth Department of Health |
Ms Daniela Gagliardi |
Rare Voices Australia |
Ms Nicole Millis |
Syndromes without a name |
Ms Heather Renton |
Secretariat
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]