Hearing services and databases across Australia are currently fragmented due to the absence of a national registry linking screening and diagnostics with the ability to measure outcomes.

The Australian National Child Hearing Health Outcomes Registry (ANCHOR) will create a single system to help provide better support, particularly for those living in Aboriginal and Torres Strait Islander and Culturally and Linguistically Diverse (CALD) communities. For children living in remote communities, hearing loss is mostly caused by early middle ear infections, which can be prevented.

Murdoch Children’s Research Institute (MCRI) is leading the project involving more than 30 organisations across the country.

To be rolled-out over three-years, the registry will launch first in Victoria and Queensland, with other jurisdictions to follow.

MCRI Associate Professor Valerie Sung, the project lead, said the registry would enable treatment and outcomes to be tracked, providing standardised, equitable care for all deaf and hard of hearing children across the nation.

More than 12,000 children in Australia have a significant hearing loss and, on average, one child is identified with hearing loss every day. Language and speech development in deaf or hard of hearing children also lags behind their hearing peers.

“Australian children benefit from technologies and leadership in universal newborn hearing screening, cochlear implants and genetic diagnosis,” Associate Professor Sung says.

But despite these advancements, hearing loss continues to impact children’s life chances and impose inequities on deaf or hard-of-hearing children. Many urgent questions need to be addressed to improve their quality of life.

“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 says.

“It could also answer many important questions around whether children born with mild hearing loss could benefit from hearing aids or early intervention, why many struggle and whether we should re-screen for hearing loss later in childhood.”

Victoria Smith’s 23 month-old son Lachlan, has mild hearing loss.

“He was diagnosed after undergoing the newborn hearing screening test and was fitted with hearing aids at two months of age,” Smith says.

“Early intervention was crucial so he could reach his full potential. But it took a while to find the right allied health services that were the best fit for Lachlan.”

Lachlan has regular hearing tests, fortnightly speech therapy and attends a playgroup for children who are deaf and hard of hearing.

Smith says a national registry would ensure deaf and hard of hearing children don’t fall further behind their peers.

“The more data and evidence we have, the better to inform best practice and ensure early intervention,” she says.

“For children with mild hearing loss there is no clear research that hearing aids are beneficial.

"It would be great to have that body of evidence as to whether that’s the best intervention for these children.”

To mark World Hearing Day, the first Australian Childhood Deafness Research - Community Advisory Group, to be based at MCRI, has also been 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 says.

“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.”