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 700 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 vic-child@rch.org.au
Primary Institution Centre for Community Child Health, The Royal Children’s Hospital, Melbourne; Murdoch Childrens Research Institute 
Major funding sources The Murdoch Childrens Research Institute (MCRI); The Centre for Community Child Health, Royal Children’s Hospital​
Study website www.rch.org.au/ccch/vic-child/
Key reference (none published as yet, currently we only have information on the website)
Are data available outside study team? From January 2016, VicCHILD will be open to enquiries from researchers regarding access to data. Formal request processes will be in place for providing researchers with de-identified data for research that has been approved by both ethics and the VicCHILD chief investigators. For more information about the data available, or how data can be accessed please contact the VicCHILD team on (03) 9345 4215 or vic-child@rch.org.au
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

There are two distinct pathways of recruitment for VicCHILD – prospective and retrospective – bringing in children of all ages.

Prospective recruitment

Since 2012, the Victorian Infant Hearing Screening Program (VIHSP) has approached, on VicCHILD’s behalf, all families whose child has been diagnosed with a permanent hearing loss. This recruitment will continue indefinitely as children are diagnosed with a hearing loss each year.

Approximately 110 families will be eligible each year, with around 70 families agreeing to join (50% uptake).

Retrospective recruitment

Between 2012 and 2015 (2017 for CHIVOS), the prospective recruitment above was supplemented by retrospective recruitment through three channels:

  • VIHSP: approximately 485 children between 2005 and 2012
  • SCOUT: approximately 95 families (children born between 2003 and 2005)
  • CHIVOS: approximately 85 young adults (currently aged 22-23 years, born between 1991 and 1993)

The retrospective recruitment boosted early VicCHILD participant numbers, capitalising on the rich data already collected.

Year commenced Project commenced 2011
Retrospective recruitment 2012-2017
Prospective recruitment 2012 – onwards
Commencement sample Enrolment, n = 515 as of May 2016
Intergenerational? No 
Imaging None 
Linkage Health services: consent to

  • Victorian Infant Hearing Screening Program
  • Victorian Perinatal Data Collection
  • Victorian Birth Defects Register
  • Australian Hearing
  • Royal Eye and Ear Hospital Data
  • Cochlear Implant Clinic data
  • Medicare/PBS data
  • Hospital admissions data

Educational services: consent to

  • School Entry Health Questionnaire
  • Australian Early Development Index
  • National Assessment Program – Language and Literacy (NAPLAN)
  • Victorian Certificate of Education (VCE)/ Victorian Certificate of Applied Learning (VCAL)

BioGrid
Please note: consent for linkage is obtained, linkage is to follow

Biosamples? Yes. Cheek swab and/or spit pot. In addition, permission to access previously collected biosamples is requested for maternal serum (collected during pregnancy) and newborn screening card
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).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
1  Enrolment (2011 – ) (ongoing rolling recruitment) 4 months – Normally recruited at the age of 4-8 months onwards, however there is no age limit and many join when the child is older 515 (as of May 2016)
2  When child enters primary school (approx.) (2012 – ) 5-7 years 50 (as of May 2016)
3  When child begins high school (approx.) (2014 – ) 9-12 years 55 (as of May 2016)
4  When child completes high school (approx.) (To be commenced at a later date) 15-17 years Yet to commence