About VicCHILD

VicCHILD is a Victorian register and research databank of children born with permanent hearing loss, based at the Royal Children’s Hospital in Melbourne.

We collect different information from children and their families to create a unique resource for advancing research in hearing loss.

Over 1,100 Victorian families have already contributed data to VicCHILD.

Watch Dr Valerie Sung talk about VicCHILD

Each year in Victoria, around 110 babies are born with a permanent hearing loss. As these children grow, they can face challenges in things that come naturally to others, like language and learning, and their quality of life.

The VicCHILD register can help us understand why some children with a hearing loss do so well, while others experience greater difficulties. This important 'bank' of information could improve interventions and ultimately the lives of families with children with hearing loss.

We follow strict ethical guidelines to protect the information collected about children and their families. The project has been approved by The Royal Children's Hospital Human Research and Ethics Committee, and all information is stored confidentially.

Publications

Valerie Sung, Libby Smith, Zeffie Poulakis, Rachel A Burt, Peter Carew, Sherryn Tobin, Melissa Wake, Data Resource Profile: The Victorian Childhood Hearing Impairment Longitudinal Databank (VicCHILD), International Journal of Epidemiology, Volume 48, Issue 5, October 2019, Pages 1409–1410h.

Contact us

Follow us on Facebook: VicCHILD Hearing Research
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Information for participants

Get involved

If your child was born with a permanent hearing loss, you could help to improve the lives of other children by joining the VicCHILD register. Families can help our researchers learn more about childhood hearing loss by joining the VicCHILD register.

If your child was born between 2020 and 2023 and you would like to register your interest in joining, register below. If you are already part of VicCHILD, can also update your contact details via the registration form.

Register for VicCHILD

What information does VicCHILD collect?

With parent permission, VicCHILD collects and stores a range of information about children (and their families) who have permanent hearing loss.

Information is sourced directly from children and parents, and health and education services that already hold information for Victorian children. Parents can choose to provide all, or just parts, of the information sought by VicCHILD.

From children and parents directly, VicCHILD collects:

• Information about the child's health and development via a parent questionnaire and simple child assessments
• A simple cheek swab and/or spit pot

In addition, VicCHILD asks parents for permission to access information that is already collected on their child, including:

• Data from health and education services and organisations, such as Australian Hearing Data, and later their results in school (NAPLAN, VCE/VCAL).
• Biological samples: maternal serum (collected during pregnancy) and the newborn screening card (the heel prick performed when the child is born)

How often is information collected?

VicCHILD will contact families to collect information on approximately four occasions over several years:

• When the family first enrols in VicCHILD. This is normally at 4-8 months. However, many families join us when their child is older.
• When the child enters primary school.
• When the child finishes primary school/begins high school.
• At the end of high school.

Who participates in VicCHILD?

All Victorian children born with permanent hearing loss can join the VicCHILD register.

Information for researchers

The need for a population-based longitudinal databank

Population-based data repositories can foster innovative research breakthroughs for conditions in which complex interactions of genetic, molecular, disease and social/environmental susceptibility may impact disease risk or treatment - such as congenital hearing loss.

The need for population-based research in children's hearing loss has been clearly articulated by the Centers for Disease Control and the US National Institutes of Health.

The Victorian Infant Hearing Screening Program (VIHSP) provides a coordinated platform for the recruitment of children with permanent hearing loss in Victoria. VicCHILD offers an efficient and flexible population-based register and database for research into congenital hearing impairment.

Ultimately, we expect VicCHILD to lead to a greater understanding of developmental, health and wellbeing outcomes for hearing-impaired children and their families, flowing on to greater societal and economic participation in adulthood.

 Our specific objectives are to facilitate population-based research that will:

• Describe secular trends in outcomes over time for repeated birth cohorts;
• Support population-based quality improvement activities over time;
• Identify and quantify factors that predict outcomes and
• Facilitate randomised controlled trials of new management and treatment approaches.
  
  

 Why is VicCHILD unique?

To our knowledge, VicCHILD is the first population-based prospective data repository for congenital hearing loss in the world; neither the US nor the UK has the supporting intervention or administrative population outcomes databases essential to such an initiative.

VicCHILD requests parent permission for access to an unequalled range of existing rich and accurate administrative datasets; thus, the burden on individual parents will be low; this will maximise participation (including groups that are often difficult to reach), retention, and value.

With a multidisciplinary team and Advisory Group, we hope it will provide new opportunities for research collaborations across varying disciplines and organisations and, further, facilitate research relationships in other states and worldwide. As well as otolaryngologists, the Advisory Group includes representatives of all three early intervention agencies, government policy departments, geneticists and ethical advisors.

VicCHILD has the potential to identify novel biomarkers associated with congenital hearing loss via comprehensive genetic studies. Both retrospectively (via Newborn Screening Cards) and prospectively (via a collection of buccal samples).

VicCHILD will remain in existence indefinitely as a resource for informing research questions that will arise.  VicCHILD holds data and biological specimens for over 1100 Victorian children and their families, with VicCHILD's importance and value being ongoing, long lasting and unique.

How will VicCHILD foster new research collaborations?

Deidentified VicCHILD data will be available to researchers and research institutions to plan and test their own research hypotheses once requested data access has been granted. The secondary objectives in establishing VicCHILD are to:

• Facilitate new partnerships, training opportunities and capacity amongst Victorian researchers for population-based research in congenital hearing impairment.
• Develop research collaborations Australia-wide and internationally, providing the blueprint for the successful replication of VicCHILD in other locations
• Present the findings to the wider community through publications and media.
  
  

What data does VicCHILD collect and how do I access it?

Detailed information about the VicCHILD cohort and what data is held by VicCHILD is available via LifeCourse. The Melbourne Children’s LifeCourse Research Initiative brings together an impressive array of longitudinal cohort studies from the Melbourne Children’s Campus.

Researchers, students, and data users can request access to de-identified VicCHILD data for ethically approved research projects. To request access to VicCHILD data, please complete the formal request process via LifeCourse.

• VicCHILD - LifeCourse
• Data Access - LifeCourse
  
  

Ethical considerations

VicCHILD has ethical approval from The Royal Children’s Hospital (RCH) Human Research Ethical Committee (HREC). The RCH HREC is constituted and operates under the NHMRC National Statement on Ethical Conduct in Research Involving Humans 2007 (updated 2018).

Participants or their parent/guardian (dependent on age appropriateness) provide detailed consent before any information or samples are collected. Families can specify which types of data they would like to contribute to VicCHILD (a family can provide consent to link their child’s data and decline to contribute a genetic sample).

Australian Childhood Deafness Research – Community Advisory Group

On World Hearing Day, which took place on Sunday, March 3rd, Murdoch Children's Research Institute and Royal Children's Hospital organised the VicCHILD (Victorian Childhood Hearing Longitudinal Databank) Family Day, to celebrate the achievements of deaf and hard-of-hearing children. Around 180 people attended the event, including children and families, researchers, clinicians, and stakeholders.

The VicCHILD families were celebrated for their contributions to the MCRI Hearing Research program and the 20th anniversary of the Victorian Infant Hearing Screening Program. At the morning tea, the children created a VicCHILD tree with drawings of their faces and career aspirations.

We look forward to continuing with VicCHILD families through the Australian National Child Hearing Health Outcomes Registry (ANCHOR), the first national system to track their care.

We invite expressions of interest to join the new Community Advisory Group for Australian Childhood Deafness Research.

Collaborators

Thanks to our key partners, funders, and supporters. Please contact VicCHILD if you would like to donate to hearing research at The Royal Children’s Hospital (RCH).

Funding

VicCHILD is currently funded by The Royal Children’s Hospital Foundation Grant 2018 - VicCHILD: A statewide deafness infrastructure bridging research & clinical care (CIA Sung V; CIB Wake M; CIC Poulakis Z; CID Amor D; CIE Jones C; CIF Carew P; CIG Connell T).

VicCHILD is supported by the Melbourne Children's LifeCourse platform, with funding from the Department of Health and Human Services, Victor Chiodo Foundation, and Morgan Stanley.

VicCHILD also receives support from Deaf Children Australia.

Previous funding:

• Murdoch Children’s Research Institute Investigator Grant Near Miss Funding, Awarded to A/Prof Valerie Sung, 2020
• The Nelson Alexander Foundation Day, 2019
• The Kyle Patrick Lamsam Convery Foundation, 2018.
• The L’Oreal For Women in Science Fellowship was awarded to A/Prof Valerie Sung, 2018.
• National Health and Medical Research Council (NHMRC) Early Career Fellowship awarded to A/Prof Valerie Sung, 2017.
• Royal Children’s Hospital Foundation Grant, 2012 – 2016.
  
  

Affiliations

• Centre for Community Child Health (CCCH), The Royal Children's Hospital (RCH)
• Prevention Innovation Research Group, Population Health Theme, MCRI 
• Department of Paediatrics, the University of Melbourne
• Department of Audiology and Speech Pathology, the University of Melbourne
• Caring for Hearing Clinic (CHIC), The Royal Children's Hospital (RCH)

Latest publications

Mardinli, A., Weerasuriya, R., Gillespie, A., Smith, L., Sung, V. (2023). Accessing hearing-health services for deaf and hard-of-hearing children during the COVID-19 pandemic: Parent and child perspectives. Australian Journal of Social Issues, 58(1) 232-258. doi: 10.1002/ajs4.231

Wang, J., Lange, K., Sung, V., Morgan, A., Saffery, R., Wake, M. (2023). Association of Polygenic Risk Scores for Hearing Difficulty in Older Adults with Hearing Loss in Mid-Childhood and Midlife: A Population-Based Cross-sectional Study Within the Longitudinal Study of Australian Children. JAMA Otolaryngology - Head and Neck Surgery, 149(3), 204-211. doi: 10.1001/jamaoto.2022.4466 

Ren, A.Z., Sung, V. (2023). Factors that influence health service access in deaf and hard-of-hearing children: a narrative review. International Journal of Audiology. doi: 10.1080/14992027.2023.2223357 

Carew, P., Shepherd, D.A., Smith, L., Soh, Q.R., Sung, V. (2023). Language and health-related quality of life outcomes of children early-detected with unilateral and mild bilateral hearing loss. Frontiers in Pediatrics, 11. doi: 10.3389/fped.2023.1210282 

Sung, V., Ching, T.Y.C., Smith, L... Carew, P. (2023). Mild matters: trial learnings and importance of community engagement in research for early identified bilateral mild hearing loss. Frontiers in Pediatrics, 11. doi: 10.3389/fped.2023.1197739 

Gillespie, A.N., Smith, L., Shepherd, D.A., Xu, J., Khanal, R., Sung, V. (2023). Socio-Emotional Experiences and Wellbeing of Deaf and Hard of Hearing Children and Their Parents before and during the COVID-19 Pandemic. Children, 10(7). doi: 10.3390/children10071147 

Carew, P., Shepherd, D.A., Smith, L., Sung, V. (2023). Spoken Expressive Vocabulary in 2-Year-Old Children with Hearing Loss: A Community Study. Children, 10(7). doi: 10.3390/children10071223 

Gillespie, A.N., Dalziel, K., Webb, E., Jones, C.A., Sung, V., HearS-cCMV Project. (2023). Targeted screening for congenital cytomegalovirus: A micro-costing analysis. Journal of Paediatrics and Child Health, 59(1) 64-71. doi: 10.1111/jpc.16239