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 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
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]