ANCHOR: Australian National Child Hearing health Outcomes Registry
Research area: The Centre for Community Child Health > Prevention Innovation | Status: Active | Funded until 2026

Australian National Child Hearing health Outcomes Registry
Building on newborn hearing screening success: towards national standards & data management.
Photograph taken by Kieren Topp.
Building on newborn hearing screening success: towards national standards & data management.
Photograph taken by Kieren Topp.
Overview
Australian children who are born deaf or hard of hearing are some of the best supported in the world through established universal newborn hearing screening (UNHS), diagnosis, device provision, early intervention and medical services.
However, there is no mechanism to measure progress and track outcomes on an individual or population level, nor is there a system to document hearing health needs for children. There is an urgent need to systematically capture data to:
- Ensure the government’s current investments into UNHS and child hearing health interventions are improving outcomes.
- Address inequity in service access, particularly Aboriginal and Torres Strait Islander and vulnerable children, to ensure no deaf or hard of hearing (DHH) child ‘slips through the cracks’.
- Track outcomes of adhoc postnatal screening, responding to the World Health Organization’s recent recommendations.
This grant aims to develop the prerequisites for a database for DHH children aged zero to 18 years, including Aboriginal and Torres Strait Islander and children from culturally and linguistically diverse (CALD) backgrounds in Victoria and Queensland, as a prototype that can be rolled out nationally. Its specific aims are to:
- Map Australia’s hearing-specific services & datasets nationally and by state.
- Bring datasets into a single system (Victoria and Queensland), linked to universal administrative datasets.
- Develop a national Core Outcomes Set to measure what matters to Australian children, families, services and funding agencies.
- Evaluate the costs and benefits of developing and maintaining ANCHOR.
- Provide proof-of-concept answers to key research questions (see below).
Key research questions
- Do children with UNHS-detected mild or unilateral hearing losses benefit from amplification or early intervention?
- Should we re-screen for hearing loss later in childhood?
- Can we achieve outcomes equity, especially in Aboriginal and Torres Strait Islander and CALD settings?
- What outcomes matter to Australian children, families, services, and funding agencies?
- Is a whole-population data system possible?
How Australian child hearing health stakeholders can be involved
Volunteer to be a Community Participant
We all want our children to reach their full potential, but what does that mean for families of deaf or hard of hearing children?
Working with families and stakeholders, the ANCHOR team will develop a Core Outcomes Set relevant to Australia (Aim 3). Part of this work will involve talking to DHH communities around the country, including Auslan users, Aboriginal and Torres Strait Islander families and culturally and linguistically diverse families.
We will be seeking community participants in the second half of 2023. Please check back then for further information.
Join the Interest Group to receive email updates
Contact us to be added to the email list.
Join the Advisory Group
Attend 6-monthly meetings, spread the word, distribute surveys, approach community members and participate in a consensus meeting on the development of a national Core Outcomes Set. Meetings will be held via Zoom, with Auslan interpreters and live captions.
The consensus meeting will be held in Melbourne, Victoria in 2024.
Register your interest in the Advisory Group via the ANCHOR Participation Survey below.
Join a Working Group
As well as being part of the Advisory Group, Working Group members will meet regularly for short periods to assist us with addressing specific aims and may help with design/methodology and contribute to publications.
To express an interest in being part of a Working Group, please complete the ANCHOR Participation Survey
Research team
Team leader - Prevention Innovation
Chief Investigator Team
- Associate Professor Valerie Sung (Murdoch Children’s Research Institute, The Royal Children’s Hospital, The University of Melbourne)
- Dr Rachael Beswick (Lauren McHugh acting) (Queensland Hospital & Health Service)
- Professor Melissa Wake (Murdoch Children’s Research Institute, University of Melbourne)
- Professor Teresa Ching (NextSense Institute, Macquarie University)
- Professor Greg Leigh AO (NextSense Institute, Macquarie University)
- Alison King (Hearing Australia)
- Associate Professor Kelvin Kong (Hunter New England Local Health District Macquarie University, University of Newcastle, Cancer Australia)
- Dr Karolina Kluk (Manchester Centre for Audiology and Deafness (ManCAD), The University of Manchester)
- Associate Professor Bonny Parkinson (Macquarie University)
- Dr Daisy Shepherd (Murdoch Children’s Research Institute, The University of Melbourne)
Associate Investigator Team
- Dr Zeffie Poulakis (Victorian Infant Hearing Screening Program, Royal Children’s Hospital, Murdoch Children’s Research Institute)
- Dr Karen Liddle (Queensland Children’s Hospital, Children’s Health Queensland Hospital and Health Service, South Brisbane and University of Queensland, St Lucia, Queensland)
- Dr Claire Iseli (Royal Children’s Hospital, Royal Victorian Eye and Ear Hospital, Royal Melbourne Hospital)
- Samantha Harkus (National Acoustic Laboratories)
- Associate Professor Shani Dettman (University of Melbourne, Royal Victorian Eye and Ear Hospital, Royal Children’s Hospital)
- Professor Catherine McMahon (Macquarie University)
- Ann Porter AM (Aussie Deaf Kids)
- Brett Casey (Deaf Connect)
- Dr Kirsty Gardner-Berry OAM (Next Sense)
- Helen Lees (Municipal Association of Victoria)
Project Team
- Libby Smith, Project Manager
- Alanna Gillespie, Research Assistant
- Kayla Elliott, Research Assistant
- Liam Shanahan, Data Linkage Officer
ANCHOR Advisory Committee: child hearing health stakeholders
Child Hearing Health Stakeholders | Organisation | |
---|---|---|
Hearing Screening | QLD Healthy Hearing Program* (CI Beswick) VIC Infant Hearing Screening Program* (AI Poulakis) Australasian Newborn Hearing Screening Committee (CI Leigh) |
|
Diagnostic audiology | AI Gardner-Berry Audiology Australia |
|
Rehabilitation audiology | Hearing Australia* (CI King) | |
Maternal and Child Health | AI Lees | |
Education | CI Leigh National Association of Australian Teacher of the Deaf Victorian College for the Deaf* |
|
Medical | ENT (CI Kong, AI Iseli) Paediatric (CI Sung, AI Liddle) RVEEH Cochlear Implant Clinic* (CI Beswick, AI Liddle) Children’s Health Queensland* (CI Beswick, AI Liddle) Royal Children’s Hospital* (CI Sung) Childhood Hearing Australasia Medical Professionals (CHAMP) Network (CI Sung, AI Liddle, AI Iseli) |
|
Early Intervention | Next Sense* (CI Leigh) Aurora School* Hear and Say* Deaf Connect* (Previously Hear for Kids) Telethon Speech and Hearing The Shepherd Centre for Deaf Children Yeerongpilly Early Childhood Development Program* RVEEH Cochlear Implant Clinic* |
|
Deaf Community | Deaf Services and the Deaf Society (AI Casey) Deafness Forum of Australia |
|
Parents of DDH Children | Aussie Deaf Kids (AI Porter) Deaf Children Australia Parents of Deaf Children Usher Kids Australia WA Foundation for Deaf Children Dubbo and District Parent Support Group |
|
Aboriginal and Torres Strait Islander Health | CI Kong AI Harkus National Aboriginal Community Controlled Health Organisation (NACCHO) Victorian Aboriginal Community Controlled Health Organisation (VACCHO) Rumbalara Aboriginal Co-operative |
|
Population hearing health researchers | CI Sung CI Wake CI Ching AI McMahon |
|
Health economics | CI Parkinson | |
Biostatistics | CI Shepherd | |
Government | Children’s Health Queensland* Australian Institute of Health and Welfare (AIHW) |
|
Allied Health | CI Dettman |
*services specific to VIC/QLD
This work is funded by the National Health and Medical Research Council (NHMRC) – Targeted Call for Research into Hearing Health 2021: Evidence-based support services “Building on newborn hearing screening success: towards national standards & data management”.
Contact us
ANCHOR Study
Murdoch Children's Research Institute
The Royal Children's Hospital
50 Flemington Road
Parkville VIC 3052
Australia
Associate Professor Valerie Sung
Team Leader/Clinician-Scientist Fellow
Phone: show phone number
Email:
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