Overview

VicCHILD is a Victorian register and research databank of children born with a 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.

Dr Valerie Sung: 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.

Information for participants

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 a permanent hearing loss can join the VicCHILD register.

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 you have not been contacted by the VicCHILD team and would like to register your interest in joining, register below. You can also update your contact details via the registration form.

Register for VicCHILD

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 upon 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 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 collection of buccal samples).

VicCHILD will remain in existence indefinitely as a resource for informing research questions which 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. 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 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 (i.e. a family can provide consent to link their child’s data, and decline to contribute a genetic sample).

Research team

Lead researcher

• Associate Professor Valerie Sung

Investigators

• Professor Melissa Wake
• Dr Zeffie Poulakis
• Dr Peter Carew
• Dr Lilian Downie
• Professor Angela Morgan
• Dr Jing Wang
• Dr Daisy Shepherd
• Project staff:
• Libby Smith (Project coordinator)
• Alanna Gillespie
• Christina Barber
• Tegan Howell
• Jessica Xu
• Kayla Elliott

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.

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 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), RCH
• Prevention Innovation Research Group, Population Health Theme, MCRI 
• Department of Paediatrics, University of Melbourne
• Department of Audiology and Speech Pathology, University of Melbourne
• Caring for Hearing Clinic (CHIC), RCH

Publications

Elliott K, Vears DF, Sung V, Poulakis Z, Sheehan J. Exploring Parent Support Needs during the Newborn Hearing Diagnosis Pathway. Journal of Clinical Medicine. 2022; 11(5):1389. https://doi.org/10.3390/jcm11051389

Ching, T., Saetre-Turner, M., Marnane, V., Scarinci, N., Chiok, C., Tulloch, K., & Sung, V. (2021). Audiologists’ perspectives on management of mild bilateral hearing loss in young children. International Journal of Audiology. doi: 10.1080/14992027.2021.1961170

Lin, J., Gillam, L., Smith, L., Carew, P., King, A., Ching, T., & Sung, V. (2021). Mild matters: Parental insights into the conundrums of managing mild congenital hearing loss. International Journal of Audiology, 1-7. DOI: 10.1080/14992027.2021.1954248

Sung, V., Williams, K., Perlow, E., Hu, Y., Ahern, S., Said, J., Karanatsios, B., Hopper, J., McNeil, J., Donnan, L., Goldfeld, S., & Wake, M. (2021). Enhancing value and uptake for whole-population cohorts of children and parents: Methods to integrate registries into the Generation Victoria cohort. Children, 8(4), 285. DOI: 10.3390/children8040285

Downie, Lilian., Amor, David., Halliday, Jane., Lewis, Sharon., Martyn, Melissa., Goranitis, Ilias. (2020). Exome Sequencing for Isolated Congenital Hearing Loss: A Cost‐Effectiveness Analysis. The Laryngoscope. 131. DOI: 10.1002/lary.29356

Thomas, L. A., Lewis, S., Massie, J., Kirk, E. P., Archibald, A. D., Barlow-Stewart, K., Delatycki, M. B. (2020). Which types of conditions should be included in reproductive genetic carrier screening? Views of parents of children with a genetic condition. European Journal of Medical Genetics, 63(12), 104075. DOI: 10.1016/j.ejmg.2020.104075

St John, M., Columbus, G., Brignell, A., Carew, P., Skeat, J., Reilly, S., & Morgan, A. T. (2020). Predicting speech-sound disorder outcomes in school-age children with hearing loss: The VicCHILD experience. International Journal of Language and Communication Disorders, 55, 537-546. doi: 10.1111/1460-6984.12536.

Sung, V., & Carew, P. (2020). Hearing loss still a challenge for kids. Republished from Pursuit under creative commons in Sounding Board, the Official Magazine of the Hearing Aid Audiology Society of Australia Ltd. p 23-25.

Sung, V., Smith, L., Poulakis, Z., Burt, R. A., Carew, P., Tobin, S., & Wake, M. (2019). Data Resource Profile: Victorian Childhood Hearing Longitudinal Databank (VicCHILD). International Journal of Epidemiology, 1–10. 

Downie, L., Halliday, J., Burt, R., Lunke, S., Lynchm E., Martyn, M., Poulakis, Z., Gaff, C., Sung, V., Wake, M., Hunter, M., Saunders, K., Rose, E., Lewis, S., Jarmolowicz, A., Phelan, D., Rehm, H., & Amor. D. (2019). Exome sequencing in infants with congenital hearing impairment: A population based cohort study. European Journal of Human Genetics. doi: 10.1038/s41431-019-0553-8

Sung, V., Downie, L., Paxton, G. A., Liddle, K., Birman, C. S., Chan, W. W… & Amor, D. (2019). Childhood Hearing Australasian Medical Professionals (CHAMP) network: Consensus guidelines on investigation and clinical management of childhood hearing loss. Journal of Paediatrics and Child Health, 55, 1013-1022. doi:10.1111/jpc.14508

Wang, J., Quach, J., Sung, V., Carew, P., Edwards, B., Grobler, A., Gold, L., & Wake, M. (2019). Academic, behavioural and quality of life outcomes of slight to mild hearing loss in late childhood: A population-based study. Archives of Disease in Childhood, 104(11), 1056-1063. doi: 10.1136/archdischild-2019-316917. PMID: 31079073.

Wang, J., Sung, V., Carew, P., Burt, R. A., Liu, M., Wang, Y., ... & Wake, M. (2019). Prevalence of childhood hearing loss and secular trends: A systematic review and meta-analysis. Academic Pediatrics, 19(5), 504-514.

Carew, P., Mensah, F., Rance, G., Flynn, T., Poulakis, Z., Wake, M. (2019). Mild-moderate congenital hearing loss: secular trends in outcomes across four systems of detection. Child: Care, Health and Development, 44(1), 71-82.

Wake, M. & Carew, P. (2015). Science, not philosophy, will help deaf and hard-of-hearing children reach their potential. Pediatrics, 137(1).