Synopsis

VicCHILD: Unlocking the secrets of hearing loss

VicCHILD is the Victorian Childhood Hearing Impairment Longitudinal Databank. It’s a Victorian register and research databank of children born with permanent hearing loss. VicCHILD ultimately aims to help children with permanent hearing loss reach their full developmental potentials.

Over 1150 families have already contributed data to VicCHILD. The information collected and stored will: help researchers and health professionals gain a better understanding of the causes and outcomes of childhood hearing loss; help researchers understand why some children with a hearing loss do well, while others face greater difficulties; and improve intervention and treatment.

Please note: VicCHILD is not a traditional longitudinal cohort study, but rather a longitudinal databank. Enrolment can occur at any age and any time, with age appropriate versions of questionnaires used. Follow-up questionnaires and assessments (if possible) are given every few years after enrolment. Therefore, not all participants have data for every “wave”.

Summary

 

Study name Victorian Childhood Hearing Impairment Longitudinal Databank
Study abbreviation VicCHILD
Current principal investigator/s Dr Valerie Sung
Professor Melissa Wake
Current project manager Libby Smith
Cohort representative (study contact) Libby Smith
Postal address Centre for Community Child Health, The Royal Children’s Hospital, 50 Flemington Rd Parkville 3052, Victoria, Australia 
Phone +613 9345 4215 
Email vicchild@mcri.edu.au
Primary Institution Centre for Community Child Health, The Royal Children’s Hospital, Melbourne; Murdoch Childrens Research Institute 
Major funding sources

The Royal Children’s Hospital​ Foundation – RCHF

The Murdoch Childrens Research Institute – MCRI 

Study website mcri.edu.au/research/projects/vicchild
Key reference Sung, V., Smith, L., Poulakis, Z., Burt, R. A., Carew, P., Tobin, S., & Wake, M. (2019). Data resource profile: The victorian childhood hearing impairment longitudinal databank (vicchild). International Journal of Epidemiology, 48(5), 1409-1410h. doi.org:10.1093/ije/dyz168 
Are data available outside study team? 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.
Study focus To provide a register and population-based longitudinal research databank of Victorian children born with a permanent hearing loss to create a unique resource for advancing research in hearing loss. Specific objectives are to facilitate population-based research (including data linkage) that will describe secular trends in outcomes over time for repeated birth cohorts; support population-based quality improvement activities over time; identify and quantify biological and psychosocial factors that predict outcomes; and facilitate randomised controlled trials of new management and treatment approaches.
Sampling frame Since 2012, participants have been recruited via the Victorian Infant Hearing Screening Program (VIHSP). Retrospective recruitment was undertaken for babies born in the years 2005 to 2011 and prospective recruitment of babies born from 2012. All families whose child had been diagnosed with a permanent hearing loss were invited. Between 2012 – 2013, families who participated in a previous cohort with congenital hearing loss (SCOUT, born 2003 to 2004) were also invtied to participate. Since 2015, participants have also been recruited via the RCH Clinical Service (Caring for Hearing Impaired Children (CHIC) Clinic).
Year commenced 2011
Commencement sample 1150 as of December 2021
Intergenerational? No 
Imaging No
Linkage Yes
Biosamples? Yes
Ethics approvals or requirements?

VicCHILD has ethical approval from The Royal Children’s Hospital (RCH) Human Research Ethics Committee (HREC). The RCH HREC is constituted and operates in accordance with 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 are able to specify which types of data they would like to contribute to VicCHILD (e.g., a family can provide consent to link their child’s data, and decline to contribute a genetic sample).

Waves

Wave Year Age (mean, range) Eligible sample
Enrolment 2011 – Ongoing 3 months – 8 years IN PROGRESS
2 year old follow-up 2012 – Ongoing 20 – 30 months IN PROGRESS
5 – 7 year old follow-up 2014 – Ongoing 5 – 8 years IN PROGRESS
9 – 12 year old follow-up 2012 – Ongoing 9 – 12 years IN PROGRESS
COVID-19 Survey 2020 3 months – 17 years N(Total)=493
COVID-19 Follow-up Survey 2021 1 – 18 years N(Total)=362