The first national registry in Australia to track treatment and outcomes for deaf and hard of hearing children will be rolled out over three years, starting in Victoria and Queensland.
The Australian National Child Hearing Health Outcomes Registry (ANCHOR) will create a single system that aims to provide better support and significantly improve the health and well-being of these children, ensuring they do not fall behind their peers.
The Murdoch Children’s Research Institute (MCRI) in Melbourne is leading the project which involves more than 30 organisations nationwide.
Project lead, paediatrician and clinician/scientist Associate Professor Valerie Sung, said the registry would track treatment and outcomes, providing standardised care for all deaf and hard of hearing children nationwide.
She said hearing services and databases across Australia were fragmented because there was no national registry that could link screening and diagnostics and measure outcomes.
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“The registry aims to help more children reach their development, learning and health potential by identifying those who need additional services and uncovering areas for improvement,” Sung said.
“It could also answer many important questions around whether children born with mild hearing loss could benefit from hearing aids or early intervention.”
Sung said that more than 12,000 Australian children have a significant hearing loss. On average one child is identified every day.
She said communication, language and speech development in deaf or hard of hearing children also lagged behind their hearing peers.
“Australian children benefit from technologies and leadership in universal newborn hearing screening, cochlear implants and genetic diagnosis,” Sung added. “But despite these advancements, hearing loss continues to impact our children’s life chances and impose inequities on deaf and hard of hearing children.”
To mark World Hearing Day, held on 3 March 2024, the first Australian Childhood Deafness Research Community Group to be based at the MCRI, was launched.
“Family engagement is a crucial element in health research as it helps to ensure that research is designed with the needs and perspectives of those with lived experience,” Sung explained.
“The aim is to strengthen partnerships between families and researchers working in childhood deafness around Australia and ensure those who are affected are being valued and heard.”
