Evidence map›Paper›PMID 41781967›Full record

ArticleBMC health services research2026

Study protocol - the Australian National Child hearing Health Outcomes Registry (ANCHOR): collecting and connecting national data into a child deafness Learning Health System.

Valerie Sung, Libby Smith, Kayla Elliott, Jing Wang, Rachael Beswick, Teresa Y C Ching, Hollie Feller, Samantha Harkus, Karolina Kluk, Kelvin Kong and 16 more

Abstract read
In one paragraph

Article in BMC health services research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Observational
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

26 authors.

Valerie SungDepartment of Paediatrics, University of Melbourne, Royal Children's Hospital, 50 Flemington Road Parkville, Melbourne, VIC, 3052, Australia. valerie.sung@unimelb.edu.au.
Libby SmithMurdoch Children's Institute, 50 Flemington Road, Parkville, VIC, 3052, Australia.
Kayla ElliottMurdoch Children's Institute, 50 Flemington Road, Parkville, VIC, 3052, Australia.
Jing WangDepartment of Paediatrics, University of Melbourne, Royal Children's Hospital, 50 Flemington Road Parkville, Melbourne, VIC, 3052, Australia.
Rachael BeswickQueensland Government Department of Health, Brisbane, QLD, 4001, Australia.
Teresa Y C ChingNextSense Institute, NextSense, Sydney, NSW, 2109, Australia.
Hollie FellerMurdoch Children's Institute, 50 Flemington Road, Parkville, VIC, 3052, Australia.
Samantha HarkusHearing Australia, Sydney, NSW, 2109, Australia.
Karolina KlukManchester Centre for Audiology and Deafness, The University of Manchester, Manchester, M15 6BH, UK.
Kelvin KongUniversity of Newcastle, Newcastle, NSW, 2300, Australia.
Karen LiddleChildren's Health Queensland Hospital and Health Service, South Brisbane, QLD, 4101, Australia.
Lauren McHughChildren's Health Queensland Hospital and Health Service, South Brisbane, QLD, 4101, Australia.
Catherine M McMahonHEAR Centre, Faculty of Medicine and Health Sciences, Macquarie University, Sydney, NSW, 2109, Australia.
Isabel O'KeeffeDepartment of Linguistics, Faculty of Medicine Health and Human Sciences, Macquarie University, Sydney, NSW, 2109, Australia.
Amie O'SheaInstitute for Health Transformation, Deakin University, Geelong, VIC, 3220, Australia.
Jermy PangQueensland Government Department of Health, Brisbane, QLD, 4001, Australia.
Bonny ParkinsonMacquarie University Centre for the Health Economy, Macquarie University, Sydney, NSW, 2109, Australia.
Ann PorterAussie Deaf Kids, Brunswick Heads, NSW, 2483, Australia.
Zeffie PoulakisMurdoch Children's Institute, 50 Flemington Road, Parkville, VIC, 3052, Australia.
Emily ShepardUsherKids Australia, Mordialloc, VIC, 3195, Australia.
Daisy ShepherdDepartment of Paediatrics, University of Melbourne, Royal Children's Hospital, 50 Flemington Road Parkville, Melbourne, VIC, 3052, Australia.
Patricia Van-BuynderHearing Australia, Sydney, NSW, 2109, Australia.
Philip WatersDeaf Victoria, Collingwood, VIC, 3066, Australia.
Greg LeighNextSense Institute, NextSense, Sydney, NSW, 2109, Australia.
Melissa WakeDepartment of Paediatrics, University of Melbourne, Royal Children's Hospital, 50 Flemington Road Parkville, Melbourne, VIC, 3052, Australia.
and the ANCHOR Collaborative Group.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundDespite early identification of deafness through universal newborn hearing screening, deaf and hard of hearing children can still face inequitable challenges in their development and life opportunities. Large scale registries, collecting standardised information on all individuals in a population with the relevant condition, can reveal variations in practices, processes, and outcomes, and identify targets for improvement. For childhood deafness, where care delivery spans multiple service sectors, data linkage is the only feasible way to bring data together. Data linkage also minimises the burden and costs of data entry by service providers, increasing future sustainability of large-scale research datasets.

methodsThe Australian National Child Hearing Health Outcomes Registry’s (ANCHOR) mission is to collect and connect child hearing health information into a Learning Health System to drive research and service delivery improvements. Its vision is to give all deaf and hard of hearing children the best opportunities to reach their full potential and live healthy, fulfilled lives. ANCHOR aims to (1) Map Australia’s child hearing services and datasets, and determine the costs of establishing and maintaining ANCHOR nationwide; (2) Create a single cross-state data system, starting with two states, as a blueprint for national extension; and (3) Develop a Core Outcome Set to measure what matters to children, young people, families, and services. ANCHOR brings together expertise in child hearing health, education, lived experience, and research, with community engagement as its guiding principle. DISCUSSION: ANCHOR will be a Learning Health System and national platform to facilitate population-based research for deaf and hard of hearing children. ANCHOR’s methodology, using community engagement at its heart, will also serve as a prototype for other health conditions using data linkages to sustainably capture large-scale data, to ensure data typically missing from vulnerable families can be included. Ultimately, ANCHOR will generate robust, actionable evidence to optimise service delivery models and equity of access for deaf and hard of hearing children and their families. This paper provides an overview of the established and evolving methodologies of the ANCHOR project to achieve its aims.

Indexed as

DeafnessLearning Health SystemRegistriesAustraliaChildChild, PreschoolHumansInfant, NewbornChild hearing healthCommunity engagementData linkageDeaf and hard of hearing childrenEquityLearning Health SystemNational registry

Identifiers

PMID41781967
PMCPMC13067657

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.