ACSQHC-ARCR-208

The Australian National Child Hearing Health Outcomes Registry (ANCHOR) is a national Learning Health System designed to collect, connect, and analyse child hearing health information to improve outcomes for deaf and hard of hearing children across Australia. ANCHOR aims to generate robust, population-level evidence to inform service delivery, policy, and equity of access, while embedding community engagement and lived experience at the core of registry design and governance. ANCHOR has three primary aims: (1) to map Australia’s child hearing health services and datasets and determine the costs of establishing and maintaining a national registry; (2) to create a cross-state linked data system, commencing in Victoria and Queensland, as a scalable blueprint for national extension; and (3) to develop and implement a nationally agreed Core Outcome Set that measures outcomes that matter to children, young people, families, and services. The registry population includes children who are deaf or hard of hearing and who engage with hearing health, early intervention, education, and related support services. In its initial phase, ANCHOR will include linked data from Victoria and Queensland, selected due to the presence of large, established statewide child hearing datasets. These data span the continuum of care, including newborn hearing screening, audiological diagnosis, hearing device provision, early intervention, education, and family support services. All registry processes are being designed to support future expansion to additional jurisdictions. Outcomes measured include clinical, developmental, educational, and psychosocial outcomes, as defined by the Core Outcome Set, alongside service-level indicators such as timing and type of intervention, access to services, and care pathways. ANCHOR operates under robust data governance aligned with FAIR principles, using secure, privacy-preserving data linkage methods, and is intended to support national scalability and broader application to other paediatric Learning Health Systems.